Re: Digest Number 1049

[Guest guest]

I would just like to say to Vilik, your article was

beautifully written and so true!

While I don't believe I am chemically sensitive,

myself, we have had clients whose patients were

terribly sensitive. We had to be very careful where we

had patient support meetings, because a lot of

buildings have chemically cleaned carpets, strongly

perfumed restrooms and other things which make MCS

People pretty sick. During our meetings I have been

very careful to wear no perfume, no scented deodorant,

etc., etc., etc.

Your recommendations for laundry were right on! They

are ones that everybody should use in order to avoid

toxic exposure.

There are so many people who have no understanding of

what it must be like to be so sensitive to the over

use of chemicals in our environment. I think you have

expressed it very well.

Jan Bolen

__________________________________________________

[Guest guest]

'oxyplus ' wrote:

====

-

- OxyPLUS is an unmoderated e-ring dealing with oxidative therapies, and ...'

> Take a look to the attachment.

[Guest guest]

:

How true -- they must learn that quiet voice in med school or something and

they talk slow too. I just want them to spit it out!!! Luckily, our

psychiatrist realizes how much I know about the meds and ER & P and asks me my

opinion sometimes. I have even suggested to him that we do this or that; he

is very receptive. I guess I'm lucky in that respect. I wish our therapist

was a bit more assertive with ER & P -- (9 yo) and I have even gave her

some suggestions on how we should do it (she has trouble breaking the topics

down so he can be successful).

Tamra (ocdmom2001)

Omaha, NE

Re: Anger, Mood Disorders, Perception - meds

>

> Anger is one of the biggest issues we deal with, and the first

thing

> we noticed when my daughter suddenly got sick (sudden onset OCD after an

> illness). I also went to her psychiatrist last month to rule out

depression

> because she was so angry, irritable, sad , etc. He felt it was still just

> OCD. Then I sat in on her therapy session that week for the first time

> because I mentioned to the therapist that I felt we weren't making much

> progress - all I could see was noncompliance and anger directed at me.

> Well... once I heard her tell her therapist about all her latest 31

flavors

> of obsessions I realized that (once again) I was misreading everything.

The

> anger is still just OCD coming at me (it did disappear when Paxil was

working

> for about 10 months). She almost never tells me what is going on in her

head,

> so all I see are the external symptoms, like anger and what seems like

> deliberate disobedience. Case in point :

> we have had ongoing battles about her sneaking around looking through our

> room, reading personal mail, getting up in the middle of the night and

going

> through the pantry, etc. Only this week did we all figure out that this is

> because she is obsessed with the idea that we are keeping secrets from

her.

> Telling her she has to respect our privacy made her furious and

belligerent,

> which made me angry and so on and so on. Realizing this is another OCD

thing

> has changed my perspective.

> So, this is a long-winded way of trying to say that anger and

> moodiness are definetly part of OCD, and, in our household, perception

> problems cut both ways - we are all misinterpreting what's going on all

the

> time! As I am gradually learning, and others have pointed out repeatedly,

> getting the OCD under control cures many other problems that might seem

> unrelated at the time.

> Of course if your daughter seriously seems depressed, take it

> seriously! It is definetly better to rule it out than to ignore it.

> Good luck to you,

>

>

>

> [This message contained attachments]

>

>

>

> ________________________________________________________________________

> ________________________________________________________________________

>

>

>

>

[Guest guest]

I was reading about the tips for dressing and the

smiley faces on the tennis shoes.. Thought I would

reveal a tip I use for Alysha, she has never been able

to get her under wear on front side front... this led

to the " thong " look... grin, so I bought all white

or light colored panties and used a permenent marker

to put a good size dot on the front band and told her

that that dot was to cover up her belly button... now

she alway gets her undies on right! I used a smiley

face sticker for awhile but of course they washed off

in the laundry.. and when I sew shorts for her I use

the same idea too.. she uses the tags in clothing to

figure out how to put clothing on.

CAT mom to Alysha DS Autistic tendencies

__________________________________________________

[Guest guest]

heheeh, thats cute, im lucky in the undie department, antha just has to look for

that peepee hole, he knows it goes in the front,lol after many remeinders

ofcourse, but its harder for some of his shorts, i shall give this a try, his

shirts he knows the tags go in back, so do ok there. thanks, shawna.

Re: Digest Number 1049

I was reading about the tips for dressing and the

smiley faces on the tennis shoes.. Thought I would

reveal a tip I use for Alysha, she has never been able

to get her under wear on front side front... this led

to the " thong " look... grin, so I bought all white

or light colored panties and used a permenent marker

to put a good size dot on the front band and told her

that that dot was to cover up her belly button... now

she alway gets her undies on right! I used a smiley

face sticker for awhile but of course they washed off

in the laundry.. and when I sew shorts for her I use

the same idea too.. she uses the tags in clothing to

figure out how to put clothing on.

CAT mom to Alysha DS Autistic tendencies

__________________________________________________

[Guest guest]

<<his shirts he knows the tags go in back, so do ok there. thanks,

shawna>>

Ted will occasionally put his t shirts on " ackwords " as he says...but

that

is because we have to cut all tags off. He also thinks that the big

picture

that is sometimes on the back of a t shirt, goes in the front, rather

than

the front that just has a smaller picture or emblem near the " heart "

area.

Every time he puts on his underware or shorts, I can hear him saying,

" Tag

in the back " ! hehe. He is just so cute!

Gail

[Guest guest]

No offense to anybody, but I'm going to need something more than

impassioned stories, and the *supposition* that mold has made

somebody sick. For me, or anybody, to come at it from your "side,"

we'd have to know about a real diagnosis, from a reputable doc, and a

direct link between the mold and the diagnosis.

>because folks should be

> very scared of this.

But they won't, without verifiable cases, with verifiable cause-and-

effect. If you can supply some, please do.

WJ

Dear WJ,

It's rather difficult to get "verifiable cause and effect" when you have prestigious groups like the CDC shooting down valid research because it might cost government or industry too much money to take care of employees who have become ill through employers' carelessness. It's rather difficult to find doctors who know much about this stuff because of people like you who convince them that it's all hogwash.

Rather difficult, but not impossible. I was exposed to stachybotrys for 11 years in a fancy university office. There are documented work orders requesting an air quality study over a period of three years that went ignored. The work order requests were based on employee illnesses, atrocious smells, leaks, termites, and other non-frivolous reasons. Turned out that roof flanges had been installed backwards causing water to pool behind bricks. If there had been a timely and caring response to correct problems, I would not have ended up suing. I was allowed to remain in my office even after an air quality study found enormously high and dangerous levels of stachybotrys (35 million cfu's). These findings were confirmed through controlled, scientific tests performed by an outside firm. How much validation do you need?

As for a "real diagnosis," I was sent to Albany, New York, for an examination by Dr. Eckardt Johanning, a globally renowned expert in this field. He tests his patients quite thoroughly and uses a well-respected laboratory to analyze results. Dr. Johanning testified in a deposition that my health problems are all directly related to stachybotrys, penicillium and aspergillus exposure. How much direct medical evidence do you need?

After four years of inconvenient litigation, I received $13,000 and the case was closed, not because of lack of evidence but because of behind-the-scenes legal shenanigans. I was a fool. I sued like a lady. I continued to work on days when I felt very sick and should have been home in bed. Should have fought back with a vengeance. Should have gone for the jugular.

I have breathing problems. I get infections easily and often. I have a seriously impaired immune system (T-cells), impaired brain function (some people treat me like I am stupid because I forget simple words), impaired nervous system with twitches, allergies, rashes, intense daily headaches, drooping eyelid, and I could easily go on and on. So, next time you write a report, remember this:

My case is not rare. It is not unusual. It is not unique. It happens every day to good, hard-working people. The "establishment" covers up. Money talks. Employee health matters less than money. That is the bottom line and people like you are part of the problem.

Joanne Ferdinando (JF)

[Guest guest]

> Dear WJ,

>

> It's rather difficult to get " verifiable cause and effect " when you

have

> prestigious groups like the CDC shooting down valid research

because it might

> cost government or industry too much money to take care of

employees who have

> become ill through employers' carelessness. It's rather difficult

to find

> doctors who know much about this stuff because of people like you

who

> convince them that it's all hogwash.

Not all hogwash. *Some* hogwash. (Y'know, I think some of you are

responding to the subhead on the article, " Don't believe the hype... "

It might be interesting to know that I, like most writers, don't

write the headlines and subheads.)

>

> Rather difficult, but not impossible. I was exposed to

stachybotrys for 11

> years in a fancy university office. There are documented work

orders

> requesting an air quality study over a period of three years that

went

> ignored. The work order requests were based on employee illnesses,

atrocious

> smells, leaks, termites, and other non-frivolous reasons. Turned

out that

> roof flanges had been installed backwards causing water to pool

behind

> bricks. If there had been a timely and caring response to correct

problems,

> I would not have ended up suing. I was allowed to remain in my

office even

> after an air quality study found enormously high and dangerous

levels of

> stachybotrys (35 million cfu's). These findings were confirmed

through

> controlled, scientific tests performed by an outside firm. How

much

> validation do you need?

>

> As for a " real diagnosis, " I was sent to Albany, New York, for an

examination

> by Dr. Eckardt Johanning, a globally renowned expert in this

field. He tests

> his patients quite thoroughly and uses a well-respected laboratory

to analyze

> results. Dr. Johanning testified in a deposition that my health

problems are

> all directly related to stachybotrys, penicillium and aspergillus

exposure.

> How much direct medical evidence do you need?

If I were writing your personal story, that might be enough to get me

started. But, like I said, I'm not a reporter, I'm a columnist. I

don't cover medical stories.

If you want your personal story in the press, you might want to

contact a local reporter, who can look at your documentation. Maybe

your story could make the front page of the local section; maybe it

could be on local TV. Heck, maybe it could be on national TV.

But I should tell you: If you go public, you'll find that I'm not

even close to the most skeptical person around. Some people will

empathize, some will sympathize, and some just plain won't believe

the story. (Some people think wresting is real, and the moon landings

were fake.)

While I'm thinking about it, I might as well address this to all the

readers here: If you didn't like what I said in my one 900-word

column, 800 words of which had nothing to do with mold-related

illnesses, if you think I'm wrongheaded, and my sadly uninformed

point of view needs correcting, *here's how you do it:*

Call your local paper(s). Call your local TV station(s). Get a

reporter (not a columnist) to come over to your house and look you in

the eye. Lots of papers and TV stations have writers who cover health

care specifically.

If you've got a newsworthy story, your story will be published. Just

know that some people -- maybe even a *lot* of people -- will be

skeptical about your story. Also, you'll probably be amazed by just

how few people will read a newspaper story, or watch a TV piece.

If you can't get a reporter to listen, you can write a letter to the

editor of your local paper. You can write a book and look for a

publisher. Or, put up a website, and document your position. (Scan

your medical records, the results of the tests at your

building/house. Put 'em up there for the world to see.)

Or, you can set up a foundation, collect some money, and hire a PR

company to get your story out.

If you feel the public needs educating, and you think your story is

the best way to educate them, I encourage you to tell it.

If there's some untold mold/illness story out there that will turn

people's heads around, and save people from getting sick: *You're the

ones to do it.*

I wish you great luck and wellness,

WJ

[Guest guest]

Could I have the info about the Reno Convention...........my doctor might go

if I can get the info.

Thanks!

[Guest guest]

:

Thanks for your response in whether I should do my son's five year boosters.

YOu said I could have his titers checked. He is a patient of Dr. Goldberg's,

is this something he could order? Is it done through a blood draw?

Thanks.

[Guest guest]

Hi ;

You might want to check at your son's school. Some states allow a waiver of

vaccinations; Arizona is one of them. I just signed an exemption statement

and wha-la, no more vaccinations. Bibide, Bobidee Boo!!!

I still will check with Dr G as Nick continues to improve. Maybe someday

we'll do the boosters, but not now.

Suzanne

From: LAVJULIE@...

Reply-

Subject: Re: Digest Number 1049

Date: Mon, 11 Mar 2002 00:53:21 EST

:

Thanks for your response in whether I should do my son's five year boosters.

YOu said I could have his titers checked. He is a patient of Dr. Goldberg's,

is this something he could order? Is it done through a blood draw?

Thanks.

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp.

[Guest guest]

In a message dated 7/16/2003 11:29:18 AM Mountain Daylight Time,

writes:

> Subject: The critters are adorable

>

> Barb I love the bears that you make. I would really like to know where you

> find your bears. Their fur looks really long. Is it? Did you make the skis

> for

> your bear or is there somewhere that you can purchase them? Also do you add

> color to the wax or just leave it clear? Pat

>

>

Barb, it sounds like we all need a " bear class " . is there any way to set one

up on this list?

Ginger

Moonlight Bath & Body â„¢

" Bathe Yourself with Moonlight "

[Guest guest]

Hi everyone,

I have had "A" for the past 14 years, been through, many dilatation's, EMT's, and then Heller myotomy and funoplication. I must say the surgery fixed my swallowing 80 percent. But I still get those wicked mean spasms.

Were any of you on the slim fast diet or any other quick weight loss program prior to the beginning of the discovery of your Achalasia?

It seems to me that this all began with me rite after I was on the slim fast diet.

M

New York

[Guest guest]

On Thu, 17 Jul 2003, R. Brill wrote:

> after a big dieting episode in his life, ANY disease

> is more likely to be brought on by any unusual or

> chronic stress in one's life (be it physical or

> emotional). That's just my humble opinion based on my

I was actually given a quiz to fill out on my first day at the doctor's

office. It asked you to check off boxes next to " major life stressors " ,

either good or bad, over the past 12 months. Supposedly, if you score

over 100, it means that you are likely to have some big health issue crop

up in the next year or so. I realized that, not only did I score over

400, but my score had been well over 200 for at least three years running.

Right now, I've discovered that if I'm on break from school or vacation

from work, I can eat. When I'm doing both those things at once, I can't

eat solid food, pretty much. (Oddly, I can often eat blue corn chips,

but not white or yellow corn chips. Go figure...) I'm in summer session

right now, and I'll have three weeks off at the end of August, but then in

September I have a full semester coming up. My husband is encouraging me

to look for another job that I might enjoy more, in hopes that it will

relieve the achalasia.

So, yeah, I'd say for me, stress is certainly a factor.

- Nikki

--

*********************************************rednikki@...********

[Guest guest]

At 09:52 AM 2/21/05, you wrote:

> From: " " <chinook001@...>

>Subject: Re: Fill docs in Seattle

>

>I want to clarify what I heard in talking with Dr Billings at break.

>Yes he is CONSIDERING fills with the proviso that you join his

>aftercare/support program to the tune of $6,000 for one year or $500

>monthly.

> >>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>

Wow !

That's not what he said on the stage is it?

He just went on about how some other doc was caring for his MN patients

and he felt he should do the same.

Thank YOU for talking to him at break and getting the 'full skinny' on that!

$500 a month is literally way over most of our budgets!!! Guess Dr.

Fitzpatrick and TR is gonna be real busy for a long time to come!!!

Don't get me started on insurance companies!!!

They are just out for profit and if they had any brains they would have

figured that it would be cheaper to pay for my band than to continue to pay

over $1000 every 3 months for meds. But then again maybe they did and

judging by the increase in my diabetic med needs they probably figured I'd

be dead in just a few more years and then look what they'd save!!!

C.

Dr. Watkins North West Weight Loss Surgery, Seattle

9/23/04

205/164/140ish

[Guest guest]

For folks who don't like to visit the website but have clogged up mailboxes, the

digest form of the group is a decent compromise. I like to get the digest in my

email, because it is faster to read than having to click on each individual post

and wait for them to open. The only disadvantage is that it is sometimes very

long because people don't bother to clip the post they are responding to (but at

least they are marked and you can scroll past them).

I don't really interpret posts that appear to be addressed to a particular

person as a " personal " post. Most of the time, they are answers to questions

that we can all benefit from. Putting a name on it just helps identify who they

are answering.

It is easy in a message board forum to feel that your posts are being ignored if

nobody responds. I have found that this is usually not the correct

interpretation. It usually just means that there was not a specific question,

so nobody felt the need to reply. I participate in another forum where I

frequently thought nobody had noticed my posts, but when I visited the chat

room, people were more likely to make comments about my posts. It is just the

nature of public message boards that most people don't comment publicly if there

was not a question asked. Of course, it does also seem that people who consider

others on the board to be friends tend to respond and I think this helps

validate the friendship feeling.

I have been observing the other forum where I participate for several years to

come to these conclusions as I have been thinking about doing my dissertation

about creating a sense of community in online message boards. I have not done

formal analysis yet, but these are some of my general conclusions.

People tend to respond to people they identify with or have some other stuff in

common. Here, we all have our back problems in common, but if we find something

else in common we are more likely to correspond in private and this creates

friendships. These friendships lead to more responses to posts which makes

those people feel a stronger sense of belonging, but can lead others to feel

excluded. The best way to get more personal is to use the chat feature of the

room. Chats tend to have more personal conversations and create a better sense

of friendship.

The main thing I have come to realize is that if nobody responds to my posts, I

should not take it personally. I am not being ignored on purpose, I just tend

to make statements rather than ask questions.

I do wonder if I would be inclined to participate in chat on this site, though.

The other place where I love to chat is all about fun conversations. This group

might not be as much fun because we all tend to complain about our physical

problems. (not that I am criticizing this--it is just a function of the

different purposes of the forum. This forum is designed to be a place to

discuss the problems caused by our scoliosis)

---------------------------------

Messenger

Show us what our next emoticon should look like. Join the fun.

[Guest guest]

I appreciate your thoughtful and informative views in this post.

The digest does work well for many of our members. Others feel that

they can access the posts even faster and more easily by going to

the site, clicking on " Messages, " and then clicking on " Expand

Messages. " (I know this suggestion has been given before, but it

probably bears repeating as our group continues to grow.) Once you

have selected " Expand Messages, " you can just scroll through at

whatever pace you choose, without waiting for any one post to open

up on your monitor. This feature does NOT allow you to reply to the

posts while your are scrolling, but as others have suggested in the

past, you can jot down the numbers of posts you want to revisit,

then pull them up later, individually, when you are ready to reply.

Your research sounds very interesting, and I hope you will keep us

posted on your findings.

I am also wondering if you might want to volunteer to run

an " investigational " chat feature at this site? I know you did not

necessarily think this would be a desirable feature to inaugurate,

given the subject matter we are dealing with here, but maybe it

would be worth a try -- having a place to vent and kvetch and so

forth, in real time . . . I look forward to your response, if any.

Best,

>

> For folks who don't like to visit the website but have clogged up

mailboxes, the digest form of the group is a decent compromise. I

like to get the digest in my email, because it is faster to read

than having to click on each individual post and wait for them to

open. The only disadvantage is that it is sometimes very long

because people don't bother to clip the post they are responding to

(but at least they are marked and you can scroll past them).

>

> I don't really interpret posts that appear to be addressed to a

particular person as a " personal " post. Most of the time, they are

answers to questions that we can all benefit from. Putting a name

on it just helps identify who they are answering.

>

> It is easy in a message board forum to feel that your posts are

being ignored if nobody responds. I have found that this is usually

not the correct interpretation. It usually just means that there

was not a specific question, so nobody felt the need to reply. I

participate in another forum where I frequently thought nobody had

noticed my posts, but when I visited the chat room, people were more

likely to make comments about my posts. It is just the nature of

public message boards that most people don't comment publicly if

there was not a question asked. Of course, it does also seem that

people who consider others on the board to be friends tend to

respond and I think this helps validate the friendship feeling.

>

> I have been observing the other forum where I participate for

several years to come to these conclusions as I have been thinking

about doing my dissertation about creating a sense of community in

online message boards. I have not done formal analysis yet, but

these are some of my general conclusions.

>

> People tend to respond to people they identify with or have some

other stuff in common. Here, we all have our back problems in

common, but if we find something else in common we are more likely

to correspond in private and this creates friendships. These

friendships lead to more responses to posts which makes those people

feel a stronger sense of belonging, but can lead others to feel

excluded. The best way to get more personal is to use the chat

feature of the room. Chats tend to have more personal

conversations and create a better sense of friendship.

>

> The main thing I have come to realize is that if nobody responds

to my posts, I should not take it personally. I am not being

ignored on purpose, I just tend to make statements rather than ask

questions.

>

> I do wonder if I would be inclined to participate in chat on this

site, though. The other place where I love to chat is all about fun

conversations. This group might not be as much fun because we all

tend to complain about our physical problems. (not that I am

criticizing this--it is just a function of the different purposes of

the forum. This forum is designed to be a place to discuss the

problems caused by our scoliosis)

>

>

> ---------------------------------

> Messenger

> Show us what our next emoticon should look like. Join the fun.

>

>

[Guest guest]

I actually did chat with some other people at the feisty site one

evening and it was fun. If we have enough people who want to chat, we

might want to start by picking a certain day and time to get

together. In the other group where I chat, we have a bunch of people

on the days that were first posted as a meeting time, but you can also

find people there at other times.

Is anybody in this group interested in using the chat feature?

[Guest guest]

SB,

I would try to attend chats. My hip replacement internet friends

have

one every Friday night, and it's fun and/or informative. Sometimes

it's more " social " than " hip replacement. " I find both good.

loriann

>

> I actually did chat with some other people at the feisty site one

> evening and it was fun. If we have enough people who want to chat,

we

> might want to start by picking a certain day and time to get

> together. In the other group where I chat, we have a bunch of

people

> on the days that were first posted as a meeting time, but you can

also

> find people there at other times.

>

> Is anybody in this group interested in using the chat feature?

[Guest guest]

Just a thought: My reason, often, for directing a particular post to a

certain person is because that person asked the question. Usually the question

and the answer both apply to the majority of us.

Carole M.

[Guest guest]

In a message dated 8/8/2005 4:14:25 AM Eastern Standard Time,

Lexapro writes:

Hi chuckyp30,

Please tell me what you mean by this sentence. Thanks.

> (do not make the same mistake I did and take it too

> >long)

[Guest guest]

Hey Group. . .

THANX for your posts Zavie, Therese, & Terry. . .your info couldn't have come

at a better time as I have received 4 private emails in the past week from

survivors who knew that I had posted information previously regarding Social

Security Benefits. I am emailing the legal aid Attorney I worked for over 30

years ago. He's a SS Attorney now, nearing retirement. Brother and Sister

Survivors planning to file for SS benefits, email me privately any

questions/concerns and I will add them. I promised 3 survivors that I would be

good, so I will. It doesn't matter whether you are in USA or CA; there's always

the people who slip through the cracks~~whatever. My X~~the ole fart had a

co-worker who was getting workman's compensation and putting roofs on houses~~go

figure. Since my COPD diagnosis, I can't climb the stairs to my daughter's 2nd

floor apartment, I know she loves the fact that I can't come by unannounced

anymore (hehehe).

Yess, my lil brother lost his lump-sum payment due to the contract of his

private insurance company per the FED government money. This may have been your

case Therese, or you may have worked and didn't have retroactive funds

available. Check your paperwork and let me know, that will be something else

that I can alert future survivors too with our government having employees

making minimum wages who don't take pride in their work anymore; also with the

'puter. . .pressing the wrong button (hehehe).

There are people getting FED benefits, working, and furthering their

education. I wish I had known how to 'work the system' from 1991 when I first

became 'disabled' until 2003 when I was 'deemed disabled' and finally approved

for benefits. Like so many others who are becoming frustrated. . .have questions

now. . .I had to continue to work.

Personally I have seen #1) 85%+ are denied initially upon filing for FED

benefit, #2) under 50~~automatic denial, #3) between 50-55 with multiple Chronic

Diseases with SS Attorney you will be approved upon appeal, #4) any age with

Chronic/Co-Morbidity Diseases, all Doctor's records, and additional personal

comments of daily life approval at appeal with a SS Attorney.

The government isn't in the business of 'giving' money to sick people;

state-funded SSI will give money to the so-called alcoholic/substance

abuser/drug dealer who has been deemed mentally ill. He's an abled body young

man who has a payee and becomes incarcerated. However SSI will not fund dental

care for children, who get infections and die~~go figure. FYI~~my 2 cents.

Take care. . .beat the heat. . .I have ALL in my prayers. . . " K "

" K "

" I AIN'T FINISHED YET " !!!

[Guest guest]

Amen K,

It is sad that in this country we have people that have to decide on eating,

and having basic thinks others take for granted or getting our medication.

Since my former employer screwed me out of staying on their insurance I am

having allot rougher time making ends meet because of the expense of my pain

meds. They cost nearly $80 a month, and if it was not for the social worker

at my docs office I would not be able to get my Gleevec period. I know many

people may say, do without cable, or do with out this and that but damn it,

I worked my entire life until I was dx'ed so why should I or any of us have

to do without because of an illness?? I will be glad when or if there comes

a day when people can get medication and health care without having to

decide on that or eating real meals. I get so sick and tried of hearing

about there is help out there for people!! It may be there but they make you

jump through so many hoops you start to feel you in a circus. It my case

because I had a good job with disability insurance I make to much money to

get much help at all, and let me tell you I wish these agencies that have

turned me down for help would have to live off of what I bring in, pay rent,

pay utilites, feed my family, and try to manage to have some of what are

considered luxuries. I mean hell the only reason we have two computers is

that my wife had one and I had one before we were married.

I am sick of pulling up to a stop light and having to be made to feel guilty

if I do not throw my change or bills in a bucket. If all of those in this

country that are considered upper class and claim to care about those less

fortunate then they are would kick in to real funds that help people and

don't pay those that manage them 50k or more a year maybe people that need

it could get help. I guess the bottom line of why I sound so pestimistic and

bitter is I worked all my life until April of 04, never ask anyone for help,

paid my taxes, and even was giving to the united way out of my check(that

stopped after i found out what a scam that is) and now that my former

employer renigged on letting me pay over $200 a month to have insurance, I

have to pretty much beg for assistance to get the medication to keep me

alive and have to pay so much money to not be in pain!?!? Sorry for my rant

I am just upset because it seems what little bit of pride I had left from

working my way up in a company to the point I was going to be making 60k a

year, was yanked away from me, and having that insurance was the only thing

I had left that reminded me of the fact I was once working and could pay my

own way for me and my family, and now I just feel screwed! Again sorry for

my little rant, but it sucks being 40 and having to scrap by because I was

exposed to something that gave me a Chronic disease and now something as

simple as going to the movies is a luxury, and I am tired of always being a

month behind on utilities, all because I make to much to get help?? Now I

wish I was just a waste case like some I know of that have everything handed

to them. Sorry again

Terry

On 7/9/07, IAintFinishedYet <kttweety@...> wrote:

>

> Hey Group. . .

> THANX for your posts Zavie, Therese, & Terry. . .your info couldn't have

> come at a better time as I have received 4 private emails in the past week

> from survivors who knew that I had posted information previously regarding

> Social Security Benefits. I am emailing the legal aid Attorney I worked for

> over 30 years ago. He's a SS Attorney now, nearing retirement. Brother and

> Sister Survivors planning to file for SS benefits, email me privately any

> questions/concerns and I will add them. I promised 3 survivors that I would

> be good, so I will. It doesn't matter whether you are in USA or CA; there's

> always the people who slip through the cracks~~whatever. My X~~the ole fart

> had a co-worker who was getting workman's compensation and putting roofs on

> houses~~go figure. Since my COPD diagnosis, I can't climb the stairs to my

> daughter's 2nd floor apartment, I know she loves the fact that I can't come

> by unannounced anymore (hehehe).

> Yess, my lil brother lost his lump-sum payment due to the contract of his

> private insurance company per the FED government money. This may have been

> your case Therese, or you may have worked and didn't have retroactive funds

> available. Check your paperwork and let me know, that will be something else

> that I can alert future survivors too with our government having employees

> making minimum wages who don't take pride in their work anymore; also with

> the 'puter. . .pressing the wrong button (hehehe).

> There are people getting FED benefits, working, and furthering their

> education. I wish I had known how to 'work the system' from 1991 when I

> first became 'disabled' until 2003 when I was 'deemed disabled' and finally

> approved for benefits. Like so many others who are becoming frustrated. .

> .have questions now. . .I had to continue to work.

> Personally I have seen #1) 85%+ are denied initially upon filing for FED

> benefit, #2) under 50~~automatic denial, #3) between 50-55 with multiple

> Chronic Diseases with SS Attorney you will be approved upon appeal, #4) any

> age with Chronic/Co-Morbidity Diseases, all Doctor's records, and additional

> personal comments of daily life approval at appeal with a SS Attorney.

> The government isn't in the business of 'giving' money to sick people;

> state-funded SSI will give money to the so-called alcoholic/substance

> abuser/drug dealer who has been deemed mentally ill. He's an abled body

> young man who has a payee and becomes incarcerated. However SSI will not

> fund dental care for children, who get infections and die~~go figure.

> FYI~~my 2 cents.

> Take care. . .beat the heat. . .I have ALL in my prayers. . . " K "

>

>

> " K "

> " I AIN'T FINISHED YET " !!!

>

>