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Hello Iris, I am Lori C. and I was diagnosed with AIH in July 1996 and had

a liver transplant on 3~11~97. Hope that you get as much from this group

as I have. I have only been here about a month. Everyone is so friendly &

helpful, and willing to listen to the good and the bad!!

WELCOME!!!!

[ ] HELLO

>From: impsych@...

>

>I JUST WANTED TO SAY HELLO TO EVERYONE.

>

>MY NAME IS IRIS, AND I JUST JOINED THIS GROUP. I AM VERY HAPPY TO FINALLY

FIND A SUPPORT GROUP WITH PEOPLE WHO SHARE THE SAME EXPERIENCES. I HOPE TO

BE SPEAKING WITH YOU AGAIN SOON.

>

>BYE FOR NOW,

>

>IRIS

>

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

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Welcome, Iris. You have found a great collection of people. They are

very supportive and eager to help in any way. Im rather new to this

list as well. I have several autoimmune diseases which are now

affecting my liver. I havent yet been diagnosed for the liver problems

but I wager it is autoimmune cholangitis or AIH.

Feel free to share with us your thoughts and feelings and struggles it

will help you keep things from gettin bottled up inside.

HUGS

Jody

--- Eileen Mcquillan <E.Mcquillan@...> wrote:

> From: " Eileen Mcquillan "

> <E.Mcquillan@...>

>

> Hello Iris

>

> Nice to hear from you!! I have a sister called

> Iris!

>

> Eileen

> [ ] HELLO

>

>

> > From: impsych@...

> >

> > I JUST WANTED TO SAY HELLO TO EVERYONE.

> >

> > MY NAME IS IRIS, AND I JUST JOINED THIS GROUP. I

> AM VERY HAPPY TO FINALLY

> FIND A SUPPORT GROUP WITH PEOPLE WHO SHARE THE SAME

> EXPERIENCES. I HOPE TO

> BE SPEAKING WITH YOU AGAIN SOON.

> >

> > BYE FOR NOW,

> >

> > IRIS

> >

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

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Guest guest

Hi Iris,

What a wonderful name!!! Happy to have you on board!

:)

>From: KATBERCOO@...

>Reply- onelist

> onelist

>Subject: Re: [ ] HELLO

>Date: Wed, 4 Aug 1999 02:06:38 EDT

>

>From: KATBERCOO@...

>

>Hello Iris!

>

>Welcome to the group!

>

>Kathy (AIH)

>Seattle area

>

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

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Guest guest

Iris,

Welcome, you will get almost every answer you need from this wonderful

group of people.

SueB.

----------

> From: impsych@...

> onelist

> Subject: [ ] HELLO

> Date: Wednesday, 4 August 1999 16:01

>

> From: impsych@...

>

> I JUST WANTED TO SAY HELLO TO EVERYONE.

>

> MY NAME IS IRIS, AND I JUST JOINED THIS GROUP. I AM VERY HAPPY TO FINALLY

FIND A SUPPORT GROUP WITH PEOPLE WHO SHARE THE SAME EXPERIENCES. I HOPE TO

BE SPEAKING WITH YOU AGAIN SOON.

>

> BYE FOR NOW,

>

> IRIS

>

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

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  • 2 weeks later...

Hello all, It is 90 degrees outside and here I sit bundled up in a blanket

shivering!!!

Well, the doctor I had lined up (infectious disease) decided that maybe I

should see a rheumatoid doctor!! So the hunt for a doctor is on! I just

feel so sick and no one understands me! I just keep getting more sicker and

no treatment. I am sending a letter to the Lyme Foundation for a referral so

hopefully help will be on the way.

Deb-Va

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--- DJinMECH@... wrote:

> From: DJinMECH@...

>

> Hello all, It is 90 degrees outside and here I sit

> bundled up in a blanket

> shivering!!!

> Well, the doctor I had lined up (infectious disease)

> decided that maybe I

> should see a rheumatoid doctor!! So the hunt for a

> doctor is on! I just

> feel so sick and no one understands me! I just keep

> getting more sicker and

> no treatment. I am sending a letter to the Lyme

> Foundation for a referral so

> hopefully help will be on the way.

> Deb-Va

> Deb-

Sorry you are feeling so rotten. Do you have a fever??

I hope you find a doc soon and get started on some good treatment. We

all know what you mean about no one understanding you. As unfair as it

is we are all in the position that we have to prove our own dx and it

is an uphill battle all the way.

I hope you feel better soon and have a good experience with a new doc

when you find one.

L(MI)

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

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Thanks , I do feel better today, but I think it is the end of the cycle,

will have a few good weeks (meaning I can function} then BAM its back

again. Hopefully by then I will have a good doctor lined up. Anyone know of

any in the Richmond area??

My hubby got bitten by a tick yesterday and i panicked!! Thats all we need is

for him to get sick! I am keeping an eye on him very closely. I have

enjoyed reading everyones notes, it is a good feeling to know that I am not

alone in this, kinda like alien abductions! LOL

Deb-VA

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--- DJinMECH@... wrote:

> From: DJinMECH@...

>

> Thanks , I do feel better today, but I think it

> is the end of the cycle,

> will have a few good weeks (meaning I can function}

> then BAM its back

> again. Hopefully by then I will have a good doctor

> lined up. Anyone know of

> any in the Richmond area??

> My hubby got bitten by a tick yesterday and i

> panicked!! Thats all we need is

> for him to get sick! I am keeping an eye on him

> very closely. I have

> enjoyed reading everyones notes, it is a good

> feeling to know that I am not

> alone in this, kinda like alien abductions! LOL

> Deb-VA

> Hi Deb-

Glad you are feeling better. Sometimes I wish we were abducted by

aliens haha at least people would listen to us.

Hope your hubby is ok and if he does show signs your doc will get him

on abx ASAP.

You are so right about not having to feel alone anymore. Until I found

this group I was feeling completely alone and didnt know what to do or

who to tourn to. This is a great bunch and everybody really cares about

each other.

L(MI)

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

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  • 2 months later...

Deb:

I have filed for SS but still in the works. I have long term disability

insurance from my work. I was totally disabled on August 18th. I have a lot

of pain in my legs and hips. But I take one day at a time. I have not quit

any of my medicines but have had four relapses in the two years. I doctor

with Dr Czaja at the Mayo Clinic so I know I am in very good hands. I also

have only one insurance company now. It is still a pretty good policy. I

only have to pay 10 percent after a $200 deductible. I also have about

10-15,000 a year of medical bills so 10% I can handle. I go to the Mayo two

times a year for a checkup. I was down there the end of September and the

bills were $5500.00 plus. So I feel pretty lucky.

Don't give up the battle. I feel that being full of pain and drugs that make

me fat is better than be dead.

Take Care

Sue AIH

Wisconsin

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Debbie,

I can answer some of your questions. I used to have a a deep, burning,

ache that felt like it was in the bone pretty much in every bone in my

body. My rheumatologist treated me with a drug called plaquinel, usually

used to treat patients with lupus. There are risks to this drug, but

very rare. I had absolutely no side effects. After 2 to 3 years on the

drug I was taken off and I rarely have any pain now unless I over do it.

I had no inflamation and no diagnosis of lupus.

When I first became sick in 1994 I slowly deteriated from my ability to

function in school. I was 25 and the school director put me on a medical

leave of absence and filled out the paperwork to apply for SSA and SSI.

(IMPORTANT) When I was interviewed by phone from disability, I was told

that they will routinely deny your application the first time, and she

said for me to re-apply when this happens. She did not have to give me

this info but knowing what to expect helped. I was denied the first time

and re-applied. It takes about 2 years but most us are intitled, so

don`t give up! I receive SSA now for going on 3 years. However I would

not recommend letting go of life as you know it and your health statis

unless you absolutely have to. Being deemed disabled is, I fined,

sometimes very hard to deal with. I praise and envy those of you who

have hung in there, I`am sure it has not been easy.

I also did get very sick of being sick and stoped taking my meds. It

didn`t take 2 months to go from normal liver levels to in the 400`s. I

DO NOT RECOMMENT IT!

I sure hpe this can be of some help!

AIH

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Don, if you have SSDI, you have medicaid and dont need a private carrier.

Medicaid pays for just about everything.

J

>From: " Don Hanson " <donhanson@...>

>Reply- onelist

>< onelist>

>Subject: RE: [ ] Hello

>Date: Sun, 24 Oct 1999 16:42:02 -0600

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>

>Hi Debbie,

>

>I have pain in my legs, arms and wrists. The pain was controlled pretty

>well

>while I was on higher doses of prednisone (20mg and up), but I'm tapering

>off of the prednisone now and I'm in a lot of pain. Pain while tapering is

>pretty common and I hope it will become tolerable soon!

>

>Fatigue is the most debilitating part of the disease for me. Two years and

>two appeals later I was approved for SSDI. It took my private carrier about

>9 months to approve me. Every three months, my private carrier asks for an

>updated doctor report (like I'm going to suddenly be all better!).

>

>The new healthcare portablility act prohibits a new carrier from excluding

>preexisting conditions under most conditions if you have not let your

>coverage lapse. I think there is a certain maximum period of time between

>dropping one carrier and picking up the next. Check it out carefully before

>you do anything.

>

>Don

>AIH Minneapolis

>

>

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

>Please support the American Liver Foundation!

>

>1.) To subscribe send e-mail to -subscribeonelist

>2.) To UNsubscribe send to -unsubscribeonelist

>3.) Digest e-mail format send to -digestonelist

>4.) Normal e-mail format send to -normalonelist

><< text3.html >>

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Hi Debbie,

I have pain in my legs, arms and wrists. The pain was controlled pretty well

while I was on higher doses of prednisone (20mg and up), but I'm tapering

off of the prednisone now and I'm in a lot of pain. Pain while tapering is

pretty common and I hope it will become tolerable soon!

Fatigue is the most debilitating part of the disease for me. Two years and

two appeals later I was approved for SSDI. It took my private carrier about

9 months to approve me. Every three months, my private carrier asks for an

updated doctor report (like I'm going to suddenly be all better!).

The new healthcare portablility act prohibits a new carrier from excluding

preexisting conditions under most conditions if you have not let your

coverage lapse. I think there is a certain maximum period of time between

dropping one carrier and picking up the next. Check it out carefully before

you do anything.

Don

AIH Minneapolis

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Hi Debbie, My name is Lori C. and i had a liver tx on 3~11~97. I was

diagnosed in July 1996, but was figured that I had AIH as long as since

1983~ that would be about 13 years I had it before I was finally diagnosed.

I was one of the UNLUCKY ones and by the time I was diagnosed in July 1996,

I was told I needed to be listed, so I was put through evaluation in Sept,

and Oct. and then listed on Oct. 18, 1996, and was given 1 year to live, I

had end~stage cirrhosis by that time.

I was transplanted in March 1997 and the surgeon said the liver was so hard

and so cirrhotic, It was amazing that I hade made it that long, and said

without the transplant I would not have lived to see the summer of 1997.

I guess in my case it was difficult because I was not diagnosed soon enough

to be able to go into a remission state, and be o.k.. On meds.

So I just have to thank God, that I did get a transplant. You know I thought

before the transplant, man that just isn't going to be a very good life to

have to live that way on meds, but life post~transplant sure beats living

with the AIH.

Take Care!! Lori C. AIH transplanted

[ ] Hello

>From: " debbie kearbey " <dlk3cids@...>

>

>Hello

> I have a question to whom has had a liver transplant. How long have you

>had AIH? When do they decide to do a liver transplant? I have had AIH for

>a year now. Just curious about how thay decide all of these things.

>Debbie-IL AIH

>

> [ ] Re Alternative treatments

>> >Date: Mon, 25 Oct 1999 16:25:25 -0400

>> >

>> ><< text2.html >>

>> ><< text3.html >>

>>

>>

>>

>___________________________________________________________________________

_

>___

>>

>___________________________________________________________________________

_

>___

>>

>>

>

>>Please support the American Liver Foundation!

>

>1.) To subscribe send e-mail to -subscribeonelist

>2.) To UNsubscribe send to -unsubscribeonelist

>3.) Digest e-mail format send to -digestonelist

>4.) Normal e-mail format send to -normalonelist

>

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Hi Debbie,

I had slightly elevated enzymes for 6 months, I

developed my first symptoms 6 weeks before I was

hospitalized and told I would need a transplant.

Everyone's different, some people live with AIH for

decades.

Below is a page from transweb

http://www.transweb.org/

I was never itchy or in any pain, nor did I suffer

internal bleeding. I had 1/8 of my liver left 3 weeks

before my transplant.

Barbara Ann

AIH Transplant Recipient

A liver transplant is the only treatment available for

most forms of " end stage liver disease " (ESLD).

The decision to treat liver disease with transplant is

one that should be made by persons expert in

liver diseases and liver transplantation. A transplant

is not reversible once it is done, therefore it is

crucial that only patients that will benefit from

transplant be transplanted.

The liver does thousands of things to maintain normal

life. It is also very able to carry on when it is

diseased and therefore most people with liver disease

do not require a transplant. However, once the

liver has reached the point of " end stage " the

progression from normal health can be rapid in some

cases. No specific criteria for who should and should

not be transplanted have been agreed upon.

Instead, the decision must be made by an experienced

team at a liver transplant center. No single

piece of data can be interpreted in the absence of the

overall picture of a person's health.

General criteria for assessing the severity of liver

disease are:

Jaundice (caused by an elevated bilirubin )

Fluid retention (called ascites or edema)

Fatigue

Blood clotting studies (Prothrombin time)

Indications of portal hypertension

Muscular wasting

Bleeding from the esophagus or stomach

These criteria are weighed together with the clinical

history of the disease (how long has each

symptom been present, are the symptoms getting

progressively worse, is it certain that the symptoms

are due to the liver disease), the overall health of

the patient, and the cause of the liver disease in

order to determine if transplant should be considered.

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Hi Debbie: I have had 3 biopsies. The 1st one in 3/97 to make a

definite diagnosis & then was prescribed 20mg of prednisone & was

gradually reduced for the 1st yr to 5mg. In 2/98 we moved to Az. I had

to find a new Dr for the 3 mo. blood tests. I was very fatigued(thought

it was from the move) but new Dr rquired tests & biopsy & found

inflammation had begun so was put back on 20 mg of prednisone. Then

gradually reduced to 10mg & began 50mg of azthioprine. In 3/99 he

started gradually reducing again & increased the azathioprine to 100mg &

by 5/99 I was off prednisone but still on 100mg of the azathioprine.

Within 3 to 4 wks I was relapsing again. So another biopsy 7/30/99 &

back on 10mg of prednisone which made me feel much better in a wk. Now I

am reducing 1mg a mo. & he is requiring labs every mo to see how low I

am going to be able to go. He said I most likely will be on 5mg forever

along with the azathioprine. So along with labs, biopsy & ultra sound

they determine how the treatment should be. I am still learning everyday

& have learned more from this group & the web sites provided. I hope my

schedule of events has given you some answers.

Leona AIH

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Don,

I have medicaid, not medicare. It pays everything.

J

>From: " Don Hanson " <donhanson@...>

>Reply- onelist

>< onelist>

>Subject: RE: [ ] Hello

>Date: Mon, 1 Nov 1999 09:23:40 -0600

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>Hi ,

>The private carrier I referred to is my private disability carrier.

>Medicare

>doesn't kick in until 2 years after the date of disability. My coverage

>starts in December. Even then, most people need or want a supplemental

>plan.

>Don

>

> RE: [ ] Hello

> >Date: Sun, 24 Oct 1999 16:42:02 -0600

> >MIME-Version: 1.0

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> >

> >Hi Debbie,

> >

> >I have pain in my legs, arms and wrists. The pain was controlled pretty

> >well

> >while I was on higher doses of prednisone (20mg and up), but I'm tapering

> >off of the prednisone now and I'm in a lot of pain. Pain while tapering

>is

> >pretty common and I hope it will become tolerable soon!

> >

> >Fatigue is the most debilitating part of the disease for me. Two years

>and

> >two appeals later I was approved for SSDI. It took my private carrier

>about

> >9 months to approve me. Every three months, my private carrier asks for

>an

> >updated doctor report (like I'm going to suddenly be all better!).

> >

> >The new healthcare portablility act prohibits a new carrier from

>excluding

> >preexisting conditions under most conditions if you have not let your

> >coverage lapse. I think there is a certain maximum period of time between

> >dropping one carrier and picking up the next. Check it out carefully

>before

> >you do anything.

> >

> >Don

> >AIH Minneapolis

> >

> >

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

> >Please support the American Liver Foundation!

> >

> >1.) To subscribe send e-mail to -subscribeonelist

> >2.) To UNsubscribe send to -unsubscribeonelist

> >3.) Digest e-mail format send to -digestonelist

> >4.) Normal e-mail format send to -normalonelist

> ><< text3.html >>

>

>Please support the American Liver Foundation!

>

>1.) To subscribe send e-mail to -subscribeonelist

>2.) To UNsubscribe send to -unsubscribeonelist

>3.) Digest e-mail format send to -digestonelist

>4.) Normal e-mail format send to -normalonelist

>

>

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

>Please support the American Liver Foundation!

>

>1.) To subscribe send e-mail to -subscribeonelist

>2.) To UNsubscribe send to -unsubscribeonelist

>3.) Digest e-mail format send to -digestonelist

>4.) Normal e-mail format send to -normalonelist

><< text3.html >>

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Gayle,

Why did they take it away?

J

>From: GALYE@...

>Reply- onelist

> onelist

>Subject: Re: [ ] Hello

>Date: Mon, 1 Nov 1999 14:35:39 EST

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>In a message dated 10/31/99 9:14:19 PM Mountain Daylight Time,

>shireen42@... writes:

>

><< 0 >>

>Hi All,

>I have ssdi and they took my medicaid away after 3 months. Plus they took

>away my foodstamps. I am left to wonder how do I pay for my medicine, dr

>visits. I am on a discount program my hospital, but still costly when you

>don " t get squat to work with. Does anyone have any information on stats of

>liver transplant patients going back to work?

>gayle

>

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

>Please support the American Liver Foundation!

>

>1.) To subscribe send e-mail to -subscribeonelist

>2.) To UNsubscribe send to -unsubscribeonelist

>3.) Digest e-mail format send to -digestonelist

>4.) Normal e-mail format send to -normalonelist

><< text3.html >>

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In a message dated 10/31/99 9:14:19 PM Mountain Daylight Time,

shireen42@... writes:

<< 0 >>

Hi All,

I have ssdi and they took my medicaid away after 3 months. Plus they took

away my foodstamps. I am left to wonder how do I pay for my medicine, dr

visits. I am on a discount program my hospital, but still costly when you

don " t get squat to work with. Does anyone have any information on stats of

liver transplant patients going back to work?

gayle

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Hi ,

The private carrier I referred to is my private disability carrier. Medicare

doesn't kick in until 2 years after the date of disability. My coverage

starts in December. Even then, most people need or want a supplemental plan.

Don

RE: [ ] Hello

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>Hi Debbie,

>

>I have pain in my legs, arms and wrists. The pain was controlled pretty

>well

>while I was on higher doses of prednisone (20mg and up), but I'm tapering

>off of the prednisone now and I'm in a lot of pain. Pain while tapering is

>pretty common and I hope it will become tolerable soon!

>

>Fatigue is the most debilitating part of the disease for me. Two years and

>two appeals later I was approved for SSDI. It took my private carrier about

>9 months to approve me. Every three months, my private carrier asks for an

>updated doctor report (like I'm going to suddenly be all better!).

>

>The new healthcare portablility act prohibits a new carrier from excluding

>preexisting conditions under most conditions if you have not let your

>coverage lapse. I think there is a certain maximum period of time between

>dropping one carrier and picking up the next. Check it out carefully before

>you do anything.

>

>Don

>AIH Minneapolis

>

>

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

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Debbie:

I had a liver transplant 10 years after being diagnosed with AIH. The

rate of progression of the disease is individualistic. Some people may never

need a transplant while others, like myself, did. The disease is

unpredictable, so there are no absolutes. Hopefully, some day researchers

may develop some more effective medications or learn how to completely wipe

out liver disease. Until that time, we just have to live and appreciate

every day.

Bonnie Patten (NYS)

AIH and post transplant

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J.

I am not certain why. The answer they have given me is I supposedly get the

max. allowed for disability. I recieve $787 per month however when I add up

my expenses per month it scares me, the social worker at the hospital keeps

telling me not to worry because it won " t help my healing process. My problem

is I live alone. I have asked them why I have a new liver if I can " t afford

to keep up with it.Life is a challenge.

Gayle

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,

Our son had Medicaid. It was great for him. Because he had ALS (Lou

Gehrig's Disease), now thought to be an autoimmune disease, he also got

additional help from the Muscular Dystrophy Association. They supplied him

with an electric wheelchair, electrically controlled hospital bed and most

of his medication which would have cost as much or more than $1000.00 each

month. I wonder if there are similar groups like MDA for people with liver

disease? Our other son, who is disabled now because of a deteriorating

back condition, only has medical coverage from Workmen's Comp for his back

condition. Even though he gets SSDI checks, he has no medical coverage for

other medical problems that might develop. I think that Medicare starts

for him this month, after a two year wait. He isn't eligible for Medicaid,

they told him, because his combined SSDI and Workmen's Comp checks add up

to too much income. Ha! He barely has enough money to survive.

Take care,

Geri

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Hi Geri,

the only help I am getting now is just the one check. On disability they

figure thats more than enough help. I am still on oxygen and have been trying

to get an extension for medicaid and I have no idea when that will happen,

get a little sick of hearing their office tell me they are working on it.

This is why I have asked this group the question of how they decide who gets

transplanted. I certainly can " t afford this new life style and i really don " t

have the energy to go back to work yet. Finding the right help takes all the

patience I have. I am thankful to still be alive but I don " t need the stress.

Gayle

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Hi again,

I am trying to find the positive in this all, I try to joke and keep laughing

and keep looking. I hate this thought but I am so close to using my

transplant as the advantage. I am still looking for where else to go,yet

there is not alot of help for us.

I am picking up some freelance work for cash. I shot a wedding two weeks ago

and had to sleep for two days. Then I had hoped to go back to shooting for

tci this month. I thought well I should be ok comming up on 5 months.But

right now my body does not see this as an option. I tire easily and am still

waiting for my strength to come back. I am not expecting much as far as aide

anymore. Does upset me that my doctors have submitted me not to work for 1 to

2 years, Based on the severity of my illness. I do wish the system worked for

the people who really need help. My whole life has been taken away when all

this happened. So I feel pretty lost now. My next question is I was told I

had to come up with money should I be hospitiliazed befor they will admit

me,can they do that? Each of my inpatient visits were emergency bound when I

could care less what my paperwork says.I can " t blame anyone for the crap the

system gives us. Surely we can find help somewhere or can we. where do we

turn? I can sypathize with and her depression. What they give us us to

work with would test the patience of God.

Gayle

<

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