Re: Purpose & Meaning

[Guest guest]

I have to agree with what one gal said, (sorry I don't have time to scroll

through all the posts...)

I don't want to be ugly or anything, but could you imagine how much people would

actually understand how we feel if it showed on the outside just all the damage

and torture it is doing on the inside???? Sorry, I am having a bad couple of

days and I just want to be done with this stupid disease

Bridget

>

> >>>

>

> >>> Purpose = Meaning.

>

> >>>

>

> >>> Have you found meaning in your sickness and pain? If so, please share.

>

> >>>

>

> >>> Thanks much!

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> >>>

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> >>>

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> >>>

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> >>>

>

> >>> *******

>

> >>> " Between stimulus and response, there is a space. In that space is our

power to choose our response. In our response lies our growth and our freedom. "

- Viktor l

>

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[Guest guest]

>

> Please re-think the travel. The airlines are required to let you bring on as

extras any equipment, medications, or other products that are medically

necessary. I routinely bring on board a third carry-on (besides my suitcase and

tote) that contains my drugs and vitamins, CPAP, and other items that are

related to my health and comfort. This stuff *does not count* when they're

enforcing the restrictions. The fact that I separate it all into its own bag

makes it easier to insist on this rule when necessary, and avoid confusion. When

flight attendants ask (and they're the only ones who care; the TSA inspectors do

not count or care how many bags you bring through), I just tell them, " It's

medical equipment. " They back right off.

>

> The TSA and the airlines all have their current restrictions online. Check

them out, and you might be pleasantly surprised at what you find.

>

>

Wonderful info to know, Sara! I copy/pasted it and emailed it to my father, who

travels a lot--but without his CPAP and other things he needs. (I didn't send

any identifying info.)

You're a great resource!

[Guest guest]

nobody here is right or wrong; like Sara said, " Whatever works " ; I too struggle

with my Faith as do many that have been faced with " unfair " challenges; I too,

sometimes feel like I am being " picked on " by God, I am embarrassed to say; then

I recall all the blessings too that have bestowed upon me. Believe me, we all

have our sad stories; we all have been cheated and many of us do not think we

can carry on another day; my challenge is that I am going through it alone while

others at least have a loved one to lean on. We each have our own stories but

should not blame God; I blame the tick that bit me; being in the wrong place at

the wrong time; deciding to take that walk in the tall grass by the

beach...having SH** luck; whatever. But we cannot play victim as hard (or easy

as that is). Everyday I want to give up but then I remember " HOPE " ; dreams of a

" normal " life again; even after 30 years of illness, I have to believe I will be

cured. We need to support each other and accept each others differences in how

they get through it. The important thing is that we all " understand " , have

empathy and kind thoughts for one another. Already, the progress in recognition

and support for this disease in the past year is indeed hopeful. No harm in

praying for a miracle for us all.

> >>>>>

> >>>>> Purpose = Meaning.

> >>>>>

> >>>>> Have you found meaning in your sickness and pain? If so, please share.

> >>>>>

> >>>>> Thanks much!

> >>>>>

> >>>>>

> >>>>>

> >>>>>

> >>>>>

> >>>>>

> >>>>>

> >>>>> *******

> >>>>> " Between stimulus and response, there is a space. In that space is our

power to choose our response. In our response lies our growth and our freedom. "

- Viktor l

> >>>>>

> >>>>>

> >>>>>

> >>>>>

> >>>>>

[Guest guest]

I have been sick with Lyme and coinfections for over 20 yrs now. I can not find

any purpose or meaning with this disease. I see all these people out there with

energy doing things with their families, working, getting educations,, having

hobbies, etc and enjoying life. I feel like I am watching everyone have a life

while everything I do is such a struggle. I want to badly to be out doing things

with my 4 kids and I wake up in the morning and can't wait till I can lay the

younger ones down for a nap so I can go back to bed. This is no life. I can not

believe for anything the higher power in this universe wants life to be like

this. I know what Quantum Physics says like in that movie " What the Bleep , Down

the Rabbit Hole " and this is not the the life I intended. Quantum Physics can

not convince me I created this. I went to church and bible college for years

feeling horrible the whole time and believeing god that whatever was wrong with

me was gone and that I was healed. I felt bad, but they told me that your body

will line up with what you believe. If I have the energy later after getting

better I would love to do something to help other people with this disease. I

know some people can have miracle healings from illnesses. Why some get them and

some are left to suffer I will NEVER understand. I am a loving nice person. I

see horrible nasty acting people who are healthy. My only purpose is to raise my

kids, who probably have Lyme too.

[Guest guest]

> No offense, but the concept of a cruel God who purposely gives people

> nasty diseases which causes them years of suffering as a 'test' makes

> me shudder.

I was going to leave this discussion to others, but I keep coming back to

this statement in my mind and decided I needed to throw in my two cents

on the difference I see between God " causing " and God " allowing. "

The way I understand it, in a nutshell, is this: God created a perfect

world. He created human beings in His image, which includes mind,

emotion, and will -- the ability to choose good or evil. His goal was a

relationship with us, and without free will a real relationship isn't possible.

Angels also evidently were given free will, and one chose to rebel and

lead others in rebellion. His goal is to " steal, kill, and destroy. " Man

chose to disobey God and follow the way of rebellion as well. As a result,

this world is now temporarily under the control of the evil one, because

man made that choice.

I do believe God " allows " evil and suffering to reign temporarily on this

world, but I completely believe that the day will come when I'll live with

Him in a new world and in a new, pain-free body. I believe He made a

way for me to do that when He sent His son to earth to become one of us,

to defeat the evil one, and to pay the debt we couldn't pay ourselves. I

also believe that He is with me in the midst of this pain, giving me

strength, holding me, and collecting my tears in his bottle, as the psalmist

states.

My answer to the original question of finding meaning in my sickness and

pain is this: It's easy to praise and follow God when things are going well.

To praise and follow Him in the midst of my pain is a gift I can give Him

and a way to fight against the kingdom of darkness. Some days it's

easier to to do that than others, but it's my goal. I'd also really like to be

well now. That's my goal, too.

-Martha

[Guest guest]

I agree with much of this however, I disagree on the fact that we chose to

follow the evil one. I believe there were two plans presented. One by Lucifer

and one by the Savior. Lucifer wanted to force us to obey and Christ wanted to

give us agency and to give the honor and glory to his father. I believe our

Father in Heaven chose Jesus' plan. I believe after this  there was a war in

the preexistence and that we were valiant and chose to follow the savior.

Because we have agency we are tempted by the evil one. But through Christ we can

repent of our sins and return to live in Paradise with our Father. I firmly

believe that I am going through this experience so I can know that my father is

there and that he is concerned and loves me. As well as to become more like him.

I am learning and growing in so many ways. It is hard to focus on this some days

but I really believe those are the days I learn the most. Anyway, I hope you can

all find some comfort and

relief today.

Love,

From: Martha <marmac@...>

Subject: Re: [ ] Re: Purpose & Meaning

Date: Wednesday, January 13, 2010, 9:02 AM

 

> No offense, but the concept of a cruel God who purposely gives people

> nasty diseases which causes them years of suffering as a 'test' makes

> me shudder.

I was going to leave this discussion to others, but I keep coming back to

this statement in my mind and decided I needed to throw in my two cents

on the difference I see between God " causing " and God " allowing. "

The way I understand it, in a nutshell, is this: God created a perfect

world. He created human beings in His image, which includes mind,

emotion, and will -- the ability to choose good or evil. His goal was a

relationship with us, and without free will a real relationship isn't possible.

Angels also evidently were given free will, and one chose to rebel and

lead others in rebellion. His goal is to " steal, kill, and destroy. " Man

chose to disobey God and follow the way of rebellion as well. As a result,

this world is now temporarily under the control of the evil one, because

man made that choice.

I do believe God " allows " evil and suffering to reign temporarily on this

world, but I completely believe that the day will come when I'll live with

Him in a new world and in a new, pain-free body. I believe He made a

way for me to do that when He sent His son to earth to become one of us,

to defeat the evil one, and to pay the debt we couldn't pay ourselves. I

also believe that He is with me in the midst of this pain, giving me

strength, holding me, and collecting my tears in his bottle, as the psalmist

states.

My answer to the original question of finding meaning in my sickness and

pain is this: It's easy to praise and follow God when things are going well.

To praise and follow Him in the midst of my pain is a gift I can give Him

and a way to fight against the kingdom of darkness. Some days it's

easier to to do that than others, but it's my goal. I'd also really like to be

well now. That's my goal, too.

-Martha

[Guest guest]

Francheska,

 

It is called FAITH!!!! Just believe that you will heal....and keep a positive

mind even your body is being ravage with LYme dont allow it to inflict your

family. You must battle it mentally. Dont give up, do things with your

family.The more you do, the more energy you will have, but also take naps to

recover. I have 5 children, and I was ravage with CA and LYMe. Sometimes i felt

that way, but im not going down, I refuse to be beaten.

LOnera

From: Francheska F <francheska_f@...>

Subject: [ ] Re: Purpose & Meaning

Date: Tuesday, January 12, 2010, 10:06 PM

 

I have been sick with Lyme and coinfections for over 20 yrs now. I can not find

any purpose or meaning with this disease. I see all these people out there with

energy doing things with their families, working, getting educations,, having

hobbies, etc and enjoying life. I feel like I am watching everyone have a life

while everything I do is such a struggle. I want to badly to be out doing things

with my 4 kids and I wake up in the morning and can't wait till I can lay the

younger ones down for a nap so I can go back to bed. This is no life. I can not

believe for anything the higher power in this universe wants life to be like

this. I know what Quantum Physics says like in that movie " What the Bleep , Down

the Rabbit Hole " and this is not the the life I intended. Quantum Physics can

not convince me I created this. I went to church and bible college for years

feeling horrible the whole time and believeing god that whatever was wrong with

me was gone and

that I was healed. I felt bad, but they told me that your body will line up

with what you believe. If I have the energy later after getting better I would

love to do something to help other people with this disease. I know some people

can have miracle healings from illnesses. Why some get them and some are left to

suffer I will NEVER understand. I am a loving nice person. I see horrible nasty

acting people who are healthy. My only purpose is to raise my kids, who probably

have Lyme too.

[Guest guest]

Sorry Elaina,

But I am never going to view chronic illness the way you do.

Rose colored glasses don't work for many chronically ill people, especially not

if you're from North Jersey.

One of our major newspapers, the Bergen Record, had a series of articles early

last fall, (unfortunately, I didn't get a chance to read them all) about the

lives of the female prostitutes in Paterson, which is the largest city here in

Passaic County. Paterson is also our county seat.

One prostitute, who has lupus, commented that the majority of the prostitutes in

Paterson have life-altering chronic illnesses and they are stuck with

prostitution as a means of getting by because they cannot get any help from the

state for their disabling medical conditions. They self-medicate with heroine to

reduce the painful symptoms of their illnesses.

Yes, it really is that difficult to get on Disability on North Jersey, and to

get help from the state for disabling medical problems unless you're either

willing to fake mental illnesses to get on SS Disability. Or if you don't have

minor children you have to give birth to a bunch of babies you're too ill to

take care of properly and cannot afford to have, so the state will give you

welfare, food stamps, and Medicaid. There is no state Medicaid coverage for

people who aren't the parents or legal guardians of minor children.

I suspect this Bergen Record series was inspired by the tragic death of a thirty

year-old prostitute who did managed to get on SSI Disability for her multiple

sclerosis, but she never had proper medical care and pain management, so she

became hooked on heroine to drown out her MS pain and turned to prostitution to

pay for it. She was murdered by a john, her body dumped in the middle of a

Paterson street, in the spring of last year.

I was one of the participants of a teleconference on healthcare early last fall

put together by my Congressman, Bill Pascrell. One of the other participants was

a disabled woman on SSDI who talked about her struggles to have access to decent

medical care. We all listened to this caller's horror stories over her

struggles to get the care she needs.

Those on SSI- the lower tier of Disability insurance only have Medicaid. In some

areas of the country, like here in North Jersey, outside of the OB-GYNs who make

their living taking care of the inner city moms who have Medicaid coverage

because they have babies nonstop, clinic doctors are the only other doctors who

will take Medicaid patients. And our North Jersey clinics are horrible. I know

this first hand as I'm stuck going to them because I don't have health

insurance. They cannot and do not provide the right kind of care for people with

disabling health conditions, except for HIV/AIDS. The clinics are financed to

focus on inner-city health issues.

Those on SSDI- the upper tier of Disability insurance have both Medicaid and

Medicare, but the Medicare yearly premium is a burden for disabled. Congressman

Pascrell said stories like that woman's are very common and this is why the

House wants to add a Disability supplemental coverage program to the Healthcare

Bill specifically to address the healthcare needs of disabled on SSI and SSDI.

I don't even have the luxury to be on SS Disability because I will not fake

mental illnesses even though I have been encouraged to do so. Pretending to have

a low level of intelligence, an intellectual disability, seems to walk

hand-in-hand with this. Faking 'crazy' and pretending to have a low IQ and an

extremely messed up emotional life, and a willingness to have your life run by

Disability shrinks who dope you up on psychotropic drugs is not a road I will

walk down.

Several years ago, one of our other major newspapers, The Star Ledger, had an

article on Emergency Room Super-users. These are people who are so ill with life

threatening health problems that they wind up in the ER close to or over a

hundred times per year. Super-users are common among the disabled homeless. A

study is underway looking into the lives of the disabled homeless who live in

the homeless shelters of the Camden, NJ area who have such extremely serious

health problems that they frequently wind up in the ER with health issues that

can be potentially fatal. So the sad reality is " X " percent of the homeless

population are severely disabled people who are not getting help they need from

the gov't- no SSI or SSDI, no Medicaid, no state financial assistance.

Our is not a kind country when it comes to chronic illness and disability. It

is far too easy to fall through the cracks, to not get the care and assistance

one needs. It's too easy to wind up in the ranks of the disabled homeless.

Tens of thousands of people die every year in this country because they lack

health insurance coverage. How many of them are disabled by chronic medical

conditions but can't get help from the gov't?

Being cursed with chronic life-altering medical problems that can leave one

impoverished, at the mercy of bad public policy when it comes to gov't

assistance programs, make it difficult or impossible to have steady access to

decent medical care, and place one at higher risk then the general population

for becoming homeless is not a compliment from God over the strength of one's

resilience.

>

> >>>

>

> >>> Purpose = Meaning.

>

> >>>

>

> >>> Have you found meaning in your sickness and pain? If so, please share.

>

> >>>

>

> >>> Thanks much!

>

> >>>

>

> >>>

>

> >>>

>

> >>>

>

> >>>

>

> >>>

>

> >>>

>

> >>> *******

>

> >>> " Between stimulus and response, there is a space. In that space is our

power to choose our response. In our response lies our growth and our freedom. "

- Viktor l

>

> >>>

>

> >>>

>

> >>>

>

> >>>

>

> >>>

[Guest guest]

Sara,

It's difficult to make something positive out of the fact that unlike most of

you here, I am not getting any medical treatment for my Lyme.

I am not married. Life is very different and far less secure for single women

with chronic illnesses. Chronically ill housewives have a greater sense of

security via their husband's income(and the family health insurance coverage

that comes with his job) that those of us who are single don't have.

I have been in the ER four times since mid-September, and spent five days in the

hospital last month just to make sure my badly pinched nerves that made my leg

barely functional one night aren't being caused by a stroke or brain tumor. But

beyond the EEG, CT scan and MRI, they allowed me one day of IV Rocephin because

of my Lyme history, and that was it. I was abruptly sent home.

I cannot get anyone at the clinics to order a lymph node biopsy to see what is

going on with my body-wide lymph node infection and node pain and pressure. The

pressure on my chest makes breathing difficult some days.

I'm losing the dexterity in my hands because the infected lymph nodes are

pressing down on my nerves, making the compression worse. Am I going to lose the

ability to do the artistic things I love like jewelry making and mixed media

artwork since some days I can barely grasp and hold anything small in my hands

anymore? My legs can be weak at times. I fell getting out of the shower once and

really banged myself up, two years ago.. I fell after my right leg gave out

once, prior to that. As time goes by, are falling incidents going to happen more

often? My right leg kinda slipped in a bad way while I was getting out of the

shower, just the other day.

My mother who is in her mid-70s has more energy and stamina then I do. I just

turned 41, but some days I feel like and function as if I was in my 90s.

I'm getting sicker and weaker at a faster rate now and I'm screwed because LLMD

aren't cheap to go to.

Where is the positive side of this?

> >>>>>

> >>>>> Purpose = Meaning.

> >>>>>

> >>>>> Have you found meaning in your sickness and pain? If so, please share.

> >>>>>

> >>>>> Thanks much!

> >>>>>

> >>>>>

> >>>>>

> >>>>>

> >>>>>

> >>>>>

> >>>>>

> >>>>> *******

> >>>>> " Between stimulus and response, there is a space. In that space is our

power to choose our response. In our response lies our growth and our freedom. "

- Viktor l

> >>>>>

> >>>>>

> >>>>>

> >>>>>

> >>>>>

[Guest guest]

Francheska,

 

I'm so sorry for your pain and sadness.  I wish there was something I could say,

but know that I do understand.

 

 

*******

" Between stimulus and response, there is a space. In that space is our power to

choose our response. In our response lies our growth and our freedom. " - Viktor

l

From: Francheska F <francheska_f@...>

Subject: [ ] Re: Purpose & Meaning

Date: Tuesday, January 12, 2010, 10:06 PM

I have been sick with Lyme and coinfections for over 20 yrs now. I can not find

any purpose or meaning with this disease. I see all these people out there with

energy doing things with their families, working, getting educations,, having

hobbies, etc and enjoying life. I feel like I am watching everyone have a life

while everything I do is such a struggle. I want to badly to be out doing things

with my 4 kids and I wake up in the morning and can't wait till I can lay the

younger ones down for a nap so I can go back to bed. This is no life. I can not

believe for anything the higher power in this universe wants life to be like

this. I know what Quantum Physics says like in that movie " What the Bleep , Down

the Rabbit Hole " and this is not the the life I intended. Quantum Physics can

not convince me I created this. I went to church and bible college for years

feeling horrible the whole time and believeing god that whatever was wrong with

me was gone and

that I was healed. I felt bad, but they told me that your body will line up

with what you believe. If I have the energy later after getting better I would

love to do something to help other people with this disease. I know some people

can have miracle healings from illnesses. Why some get them and some are left to

suffer I will NEVER understand. I am a loving nice person. I see horrible nasty

acting people who are healthy. My only purpose is to raise my kids, who probably

have Lyme too.

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

Lyme Disease News continually updated from thousands of sources around the

net: http://www.topix.net/health/lyme-disease

MedWorm: The latest items on: Lyme Disease

http://tinyurl.com/23dgy8

[Guest guest]

I started this thread in hopes of allowing people to think about the topic and

share and maybe even inspire others.  To fine extent, this has happened, I

think, but I'm also disappointed in how some folks' comments have been

received.  I never thought that anyone would be in any way condemned for not

finding a meaning or not having " faith! "

 

If anyone has been hurt by the conversation in this thread, I'm so sorry that's

happened.  You are certainly entitled to share your pain (this is a support

group, after all) and not be judged for how your are dealing with it.  That you

are still pushing through it and still fighting is testimony to your strength

and courage.  And that's plenty; it's enough.  It's your own journey and you

have the right to find your own way.  Talk, share, rage if that is what will

help you to heal.

 

 

 

*******

" Between stimulus and response, there is a space. In that space is our power to

choose our response. In our response lies our growth and our freedom. " - Viktor

l

 

[Guest guest]

Bah, I'm used to it. I grew up in a fundamentalist home, so this kind of

testimony is very familiar to me. And my graduate degree was largely focused on

how people use religion and other thought patterns to cope with transformative

or catastrophic change. I always seem to find myself in the midst of groups that

are struggling with that; it only now occurs to me that 25 years of adapting to

Lyme might have given me some specific insight about that, which is why I

pursued that line of study in the first place.

I completely support those of you who have found strength in the Christian path.

There's a lot there that's really helpful; I've leaned on many of those same

rocks myself, and know the comfort they offer. And those of us whose

explorations took us elsewhere have found other sources of strength as well,

which we know to be no less sustaining and valid. Quite a few of us are finding

sustenance in far more mundane realities, and within ourselves. It's really

helpful to watch people who know how to tap their own inner strength, and are

doing it well.

The main thing is that when it comes to Lyme, we are walking this path together.

Freely sharing what's worked for us, and where we are hurting, is what this list

is for. For many of us, religion -- Christianity, Judaism, Paganism, Zen,

whatever floats our boats -- has given us important tools to help us cope. I

think this list will become much richer for all of us in the long run if we can

open a space in which we can even talk about these sources of strength in mutual

trust and respect, in a way that's inclusive.

If we can't manage it -- well, hell, nobody else in America is doing a very good

job of it these days, so it wouldn't be anything new. Sigh.

Sara

On Jan 13, 2010, at 12:12 09PM, C-H wrote:

> I started this thread in hopes of allowing people to think about the topic and

share and maybe even inspire others. To fine extent, this has happened, I

think, but I'm also disappointed in how some folks' comments have been received.

I never thought that anyone would be in any way condemned for not finding a

meaning or not having " faith! "

>

> If anyone has been hurt by the conversation in this thread, I'm so sorry

that's happened. You are certainly entitled to share your pain (this is a

support group, after all) and not be judged for how your are dealing with it.

That you are still pushing through it and still fighting is testimony to your

strength and courage. And that's plenty; it's enough. It's your own journey

and you have the right to find your own way. Talk, share, rage if that is what

will help you to heal.

>

>

>

>

>

>

> *******

> " Between stimulus and response, there is a space. In that space is our power

to choose our response. In our response lies our growth and our freedom. " -

Viktor l

>

>

>

>

>

>

>

[Guest guest]

Sara,

You make me smile!

Maureen

Re: [ ] Re: Purpose & Meaning

<Bah, I'm used to it. I grew up in a fundamentalist home, so this kind of

testimony is very familiar to me. And my graduate degree was largely focused

on how people use religion and other thought patterns to cope with

transformative or catastrophic change. I always seem to find myself in the

midst of groups that are struggling with that; it only now occurs to me that

25 years of adapting to Lyme might have given me some specific insight about

that, which is why I pursued that line of study in the first place.

<I completely support those of you who have found strength in the Christian

path. There's a lot there that's really helpful; I've leaned on many of

those same rocks myself, and know the comfort they offer. And those of us

whose explorations took us elsewhere have found other sources of strength as

well, which we know to be no less sustaining and valid. Quite a few of us

are finding sustenance in far more mundane realities, and within ourselves.

It's really helpful to watch people who know how to tap their own inner

strength, and are doing it well.

<The main thing is that when it comes to Lyme, we are walking this path

together. Freely sharing what's worked for us, and where we are hurting, is

what this list is for. For many of us, religion -- Christianity, Judaism,

Paganism, Zen, whatever floats our boats -- has given us important tools to

help us cope. I think this list will become much richer for all of us in the

long run if we can open a space in which we can even talk about these

sources of strength in mutual trust and respect, in a way that's inclusive.

<If we can't manage it -- well, hell, nobody else in America is doing a very

good job of it these days, so it wouldn't be anything new. Sigh.

Sara

On Jan 13, 2010, at 12:12 09PM, C-H wrote:

> I started this thread in hopes of allowing people to think about the topic

and share and maybe even inspire others. To fine extent, this has happened,

I think, but I'm also disappointed in how some folks' comments have been

received. I never thought that anyone would be in any way condemned for not

finding a meaning or not having " faith! "

>

> If anyone has been hurt by the conversation in this thread, I'm so sorry

that's happened. You are certainly entitled to share your pain (this is a

support group, after all) and not be judged for how your are dealing with

it. That you are still pushing through it and still fighting is testimony

to your strength and courage. And that's plenty; it's enough. It's your

own journey and you have the right to find your own way. Talk, share, rage

if that is what will help you to heal.

>

>

>

>

>

>

> *******

> " Between stimulus and response, there is a space. In that space is our

power to choose our response. In our response lies our growth and our

freedom. " - Viktor l

>

>

>

>

>

>

>

[Guest guest]

Elaina,

Hope you're still around to see this message...

I am sorry you are leaving our support group. I wish you would change your

mind. There is still plenty of support here--can you not " take what you like

and leave the rest " ?

You yourself have given so many positive messages to all of us over the past

year. We will be the poorer for your absence.

If you do leave, please know that I consider you to be one terrific,

courageous 14 year old who is wise beyond her years.

Maureen

[Guest guest]

Elaina,

I too will miss your presence. When I first joined this group last year your

courage and intelligence (at such a young age) truly lifted my spirits. Perhaps

you could join a group for teens--sadly there are many who have tick-borne

illnesses.

Kim

RE: [ ] Re: Purpose & Meaning

Elaina,

Hope you're still around to see this message...

I am sorry you are leaving our support group. I wish you would change your

mind. There is still plenty of support here--can you not " take what you like

and leave the rest " ?

You yourself have given so many positive messages to all of us over the past

year. We will be the poorer for your absence.

If you do leave, please know that I consider you to be one terrific,

courageous 14 year old who is wise beyond her years.

Maureen

[Guest guest]

,

Your situation is why I am involved in my local lyme support group. Being a

retired social worker supervisor who supervised a unit of Social Workers who

helped welfare recipients get on SSDI & SSI, I continue to be aghast at the

medical care system in my country. That is why I have been pushing for the

federal medical care program as well as the issues improving standardized lyme

treatment so that folks like you can get real lyme treatment.

Yes, I know about self medication to deal with mental and physical pain because

most of the homeless clients I dealt with were doing just that. I do not think

that people fake mental illnesses to get on SSDI. For most of those people

their borderline neuroses combined with their physical problems equaled

disability when I was dealing with them. That is one way my staff got people on

SSDI.

I disagree about poor people having a lot of children. In California where I

worked, poor people on welfare actually had fewer children than those in the

general population. We must all be very careful and not turn on those suffering

like us--the oppressors will win if we turn on other oppressed people. They

want us to fight among ourselves so they do not have to deal with our problems.

Just remember the poor whites and blacks in the south--that is how the wealthy

kept both under control.

Kathleen

They self-medicate with heroine to reduce the painful symptoms of their

illnesses. Yes, it really is that difficult to get on Disability on North

Jersey, and to get help from the state for disabling medical problems unless

you're either willing to fake mental illnesses to get on SS Disability. Or if

you don't have minor children you have to give birth to a bunch of babies you're

too ill to take care of properly and cannot afford to have, so the state will

give you welfare, food stamps, and Medicaid. There is no state Medicaid coverage

for people who aren't the parents or legal guardians of minor children. I was

one of the participants of a teleconference on healthcare early last fall put

together by my Congressman, Bill Pascrell. One of the other participants was a

disabled woman on SSDI who talked about her struggles to have access to decent

medical care. We all listened to this caller's horror stories over her

struggles to get the care she needs.

>

> Those on SSI- the lower tier of Disability insurance only have Medicaid. In

some areas of the country, like here in North Jersey, outside of the OB-GYNs who

make their living taking care of the inner city moms who have Medicaid coverage

because they have babies nonstop, clinic doctors are the only other doctors who

will take Medicaid patients. And our North Jersey clinics are horrible. I know

this first hand as I'm stuck going to them because I don't have health

insurance. They cannot and do not provide the right kind of care for people with

disabling health conditions, except for HIV/AIDS. The clinics are financed to

focus on inner-city health issues.

>

> Those on SSDI- the upper tier of Disability insurance have both Medicaid and

Medicare, but the Medicare yearly premium is a burden for disabled. Congressman

Pascrell said stories like that woman's are very common and this is why the

House wants to add a Disability supplemental coverage program to the Healthcare

Bill specifically to address the healthcare needs of disabled on SSI and SSDI.

>

> I don't even have the luxury to be on SS Disability because I will not fake

mental illnesses even though I have been encouraged to do so. Pretending to have

a low level of intelligence, an intellectual disability, seems to walk

hand-in-hand with this. Faking 'crazy' and pretending to have a low IQ and an

extremely messed up emotional life, and a willingness to have your life run by

Disability shrinks who dope you up on psychotropic drugs is not a road I will

walk down.

>

> Several years ago, one of our other major newspapers, The Star Ledger, had an

article on Emergency Room Super-users. These are people who are so ill with life

threatening health problems that they wind up in the ER close to or over a

hundred times per year. Super-users are common among the disabled homeless. A

study is underway looking into the lives of the disabled homeless who live in

the homeless shelters of the Camden, NJ area who have such extremely serious

health problems that they frequently wind up in the ER with health issues that

can be potentially fatal. So the sad reality is " X " percent of the homeless

population are severely disabled people who are not getting help they need from

the gov't- no SSI or SSDI, no Medicaid, no state financial assistance.

>

> Our is not a kind country when it comes to chronic illness and disability. It

is far too easy to fall through the cracks, to not get the care and assistance

one needs. It's too easy to wind up in the ranks of the disabled homeless.

>

> Tens of thousands of people die every year in this country because they lack

health insurance coverage. How many of them are disabled by chronic medical

conditions but can't get help from the gov't?

>

> Being cursed with chronic life-altering medical problems that can leave one

impoverished, at the mercy of bad public policy when it comes to gov't

assistance programs, make it difficult or impossible to have steady access to

decent medical care, and place one at higher risk then the general population

for becoming homeless is not a compliment from God over the strength of one's

resilience.

>

>

>

[Guest guest]

Kathleen,

There is no Lyme support group in my area.

I don't know where you live. But here in North Jersey SS Disability and the

medical and social/financial support system mainly works to support the needs of

the urban poor and yes, faking mental illness to get on SSD for physical

ailments really is how it works here, and it's been this way for decades. And

yes, poor people who have kids they cannot afford to take care of are very much

catered to by our system.

I know someone with disabling physical health problems who was forced to fake

mental health issues starting back in the 1980s, back when she was in her 50s

and she became too disabled to work by debilitating and rather painful back and

knee problems, and she required multiple surgeries. She has had to play along

game with this for decades. Now she's pushing 80 years old, a widow in an

assisted living facility receiving $500 per month on Social Security, who still

is actively required to 'play up' the mental illness diagnosis to receive

additional medical and financial help.

When I first became ill in the mid-90s and wound up hospitalized three times

(for longish stays) due to my lyme caused heart problems, every social worker I

spoke to said the same thing: in order to receive some form of assistance you

either need to be diagnosed with a mental illness, or need to have a baby, or to

be legally blind, or HIV positive. I've heard this sort of thing over and over

again throughout the years. And there was the mantra " Medicaid is for the

mentally ill " .

Mental illness is a cash cow in terms of the NJ state government receiving money

from the feds to cover the healthcare and social support costs of the

chronically ill, and low income or unemployed, and uninsured state residents and

they play this to the hilt, just for the money.

One of the smaller community hospital's defines everyone in terms of mental

health issues because it makes them money. They are a teaching hospital for the

nursing program at a nearby state university. The emphasis is on psychiatric

nursing, so all hospital patients are assessed according to behavior health

issues. Their in-house clinic for physical ailments is completely tied into

their psychiatric clinic. At one time I'd met several female cardiac patients

from that hospital who were required to go through the psychiatric clinic in

order to receive medical care for their heart problems. The staff shrink was

their primary care doctor and they were required to take antidepressants and

anti-anxiety drugs. They were required to undergo random drug testing to confirm

they were taking their psychotropic drugs religiously, or else they'd be dropped

from of the cardiac care program. That's pretty darn creepy, but that's the way

it goes.

I tried applying for Disability back in 1994 due to my lyme caused heart

problems, but I was turned down. When I called up the local SS office, the SS

employee I spoke told me outright to have myself diagnosed with a mental illness

to get on Disability. This is simply how it works here. Everyone knows this,

it's no secret.

There was an article in our Bergen Record newspaper in the 1990s about a spike

in cases of Multiple Personality Disorder for a while here in NJ. Nationwide,

MPD is normally a rare diagnosis, and NJ's spike is cases was noticed. The

journalist who wrote the article came right out and said that the MPD spike was

directly tied to people applying for Disability.

When I was in the hospital last month, after my nerves became so badly pinched

to the point I could barely use my leg, and I had a CT scan, MRI and EEG to make

sure I hadn't had a stroke or something, the neurologist assigned to me pointed

out that I needed to be diagnosed with mental health problems in order to get on

Disability for Lyme caused health damage here in NJ. But I will not play along.

Under the G.W. Bush administration, his second term, hospitals were strongly

encouraged to outsource their in-house clinics to private corporations, which

most of the hospitals in my area, including my local University Medical Center

did, back in 2008. The feds reimburse a hospital $25 for each clinic patient

visit if the clinic is in-house. They reimburse $100 per patient if the clinic

is out-sourced.

Here in North Jersey, the clinics were outsourced to a corporation whose

emphasis is urban medical care and the quality of medical care is poor at best.

They like to emphasize their out-patient drug and alcohol rehab programs for

younger and middle aged adults, and their special senior citizen addicts

program; their ability to get poor mothers on WIC and food stamps quickly, and

the like. These clinics are where everyone without insurance, including

suburbanites like me who don't have children and aren't stupid enough to use

illegal drugs or abuse alcohol are stuck dealing with for medical care. And yes,

they are filled with women who have multiple kids in tow.

There are so-called " Disability Belts " , areas of the country where Disability

has become a form of Welfare II in urban and rural poor communities, especially

since Welfare Reform was enacted in the mid-90s. Unfortunately there is an urban

Disability Belt here in North Jersey. Others are found in the poorest counties

of rural West Virginia, in the poor neighborhoods of Miami, and in other spots

around the country.

This " Disability Belt " system determines how social services- medical and

financial support programs- function in the areas in and near these belts. This

set-up decides whose needs are met and whose needs go ignored. Suburbanites who

are chronically ill, and suburbanites who are the uninsured and underinsured

healthy who suddenly develop life threatening illnesses like cancer, are all

commonly short-changed in my area. The deep flaws in our system are fodder for

articles in our local newspapers from time to time, but nothing is ever done

about the problems.

In the Disability Belts, like the one here in North Jersey, mental health

issues, both legitimate issues and faked issues, are a fast-track method for

putting urban and rural welfare recipients on Disability, to transfer them from

the state's financial burden to a federal financial burden.

>

> ,

>

> Your situation is why I am involved in my local lyme support group. Being a

retired social worker supervisor who supervised a unit of Social Workers who

helped welfare recipients get on SSDI & SSI, I continue to be aghast at the

medical care system in my country. That is why I have been pushing for the

federal medical care program as well as the issues improving standardized lyme

treatment so that folks like you can get real lyme treatment.

>

> Yes, I know about self medication to deal with mental and physical pain

because most of the homeless clients I dealt with were doing just that. I do

not think that people fake mental illnesses to get on SSDI. For most of those

people their borderline neuroses combined with their physical problems equaled

disability when I was dealing with them. That is one way my staff got people on

SSDI.

>

> I disagree about poor people having a lot of children. In California where I

worked, poor people on welfare actually had fewer children than those in the

general population. We must all be very careful and not turn on those suffering

like us--the oppressors will win if we turn on other oppressed people. They

want us to fight among ourselves so they do not have to deal with our problems.

Just remember the poor whites and blacks in the south--that is how the wealthy

kept both under control.

>

> Kathleen

>

>

>

> They self-medicate with heroine to reduce the painful symptoms of their

illnesses. Yes, it really is that difficult to get on Disability on North

Jersey, and to get help from the state for disabling medical problems unless

you're either willing to fake mental illnesses to get on SS Disability. Or if

you don't have minor children you have to give birth to a bunch of babies you're

too ill to take care of properly and cannot afford to have, so the state will

give you welfare, food stamps, and Medicaid. There is no state Medicaid coverage

for people who aren't the parents or legal guardians of minor children. I was

one of the participants of a teleconference on healthcare early last fall put

together by my Congressman, Bill Pascrell. One of the other participants was a

disabled woman on SSDI who talked about her struggles to have access to decent

medical care. We all listened to this caller's horror stories over her

struggles to get the care she needs.

> >

> > Those on SSI- the lower tier of Disability insurance only have Medicaid. In

some areas of the country, like here in North Jersey, outside of the OB-GYNs who

make their living taking care of the inner city moms who have Medicaid coverage

because they have babies nonstop, clinic doctors are the only other doctors who

will take Medicaid patients. And our North Jersey clinics are horrible. I know

this first hand as I'm stuck going to them because I don't have health

insurance. They cannot and do not provide the right kind of care for people with

disabling health conditions, except for HIV/AIDS. The clinics are financed to

focus on inner-city health issues.

> >

> > Those on SSDI- the upper tier of Disability insurance have both Medicaid and

Medicare, but the Medicare yearly premium is a burden for disabled. Congressman

Pascrell said stories like that woman's are very common and this is why the

House wants to add a Disability supplemental coverage program to the Healthcare

Bill specifically to address the healthcare needs of disabled on SSI and SSDI.

> >

> > I don't even have the luxury to be on SS Disability because I will not fake

mental illnesses even though I have been encouraged to do so. Pretending to have

a low level of intelligence, an intellectual disability, seems to walk

hand-in-hand with this. Faking 'crazy' and pretending to have a low IQ and an

extremely messed up emotional life, and a willingness to have your life run by

Disability shrinks who dope you up on psychotropic drugs is not a road I will

walk down.

> >

> > Several years ago, one of our other major newspapers, The Star Ledger, had

an article on Emergency Room Super-users. These are people who are so ill with

life threatening health problems that they wind up in the ER close to or over a

hundred times per year. Super-users are common among the disabled homeless. A

study is underway looking into the lives of the disabled homeless who live in

the homeless shelters of the Camden, NJ area who have such extremely serious

health problems that they frequently wind up in the ER with health issues that

can be potentially fatal. So the sad reality is " X " percent of the homeless

population are severely disabled people who are not getting help they need from

the gov't- no SSI or SSDI, no Medicaid, no state financial assistance.

> >

> > Our is not a kind country when it comes to chronic illness and disability.

It is far too easy to fall through the cracks, to not get the care and

assistance one needs. It's too easy to wind up in the ranks of the disabled

homeless.

> >

> > Tens of thousands of people die every year in this country because they lack

health insurance coverage. How many of them are disabled by chronic medical

conditions but can't get help from the gov't?

> >

> > Being cursed with chronic life-altering medical problems that can leave one

impoverished, at the mercy of bad public policy when it comes to gov't

assistance programs, make it difficult or impossible to have steady access to

decent medical care, and place one at higher risk then the general population

for becoming homeless is not a compliment from God over the strength of one's

resilience.

> >

> >

> >

>