This is very long but please read and share.

[Guest guest]

Hello, I have been reading these text messages for along time now but this is my

first time to respond to your group in this way.  My name is Sandy and my

Daughter is 37 years old. A beautiful girl with brilliance and personality and a

mother of two beautiful and perfectly healthy sons, ages 9

and 10,  but......she was diagnosed with poly articular JRA at the age of three.

She became a patient at Kelsey Seibold in Houston immediately after the

diagnosis. Her doctor was Earl J. Brewer and at the time he was the President of

the National Arthritis Foundation. Needless to say we were lucky enough to get

led straight to the best, first! However, even with the elevated level of care

she received her disease progressed so rapidly that by the time she was five

years old her joints were already fused in her hips and knees. She was put on

any and everything that was available but nothing slowed down the progression

and at the early age of five she had 39 joints damaged. She participated in the

Ely Lilly drug studies and she was taking gold shots and methotrexate. By the

time she was eight years old she was un-insurable and the Shriners Hospital took

her in as a patient and took care of her until she was over their allowed age

limit. (18 years old) When she was 19 she was considered an adult and applied

for medicaid benefits. She was denied several times and their explanation was as

follows,.. " Although arthritis is a painful disease it is not considered to be

debilitating. " I bet they never had a child that had arthritis! They finally

approved her and the doctors agreed that she was past puberty and her growth

plates had stopped growing so she was allowed to begin the painful journey of

joint replacements. The first round of surgery was bi-lateral  hip

replacements and then one knee at a time as she could recuperate. Her

limitations did not stop her and she was strong enough personally to give in to

a wheel chair. Her physical body was now better and  chose to become a mother.

Needless to say, I, as her mother, was reluctant (to say the very least) to want

her to struggle with pregnancy and the physical difficulties of  taking care

of a child.  When she got pregnant the doctors instructed her to take only

Vicodin pain medicine saying that it was the best thing she could do for her

unborn child. Until then she had never taken prescription pain medicine except

for surgery. She had been able to  deal with her pain mostly with ibuprofen

therapy. We listened and followed their instructions to a tee. She delivered

through a c-section and was elated to deliver a beautiful baby girl. Her life

was great for the first time. She felt that she finally had something perfect

from her life. I have to tell you that something worse than arthritis happened

to my daughter next,  her beautifully healthy ,happy, baby girl died from

meningecoccial meningitis after only sixteen months of life. Healthy and happy

in the morning and gone from her by nights end. I can not tell you what that did

to my daughters spirit. She grieved as any mother would and after seven years

passed and her joint replacements were successful and completed, she chose

to have another child.  I was very angry at her for putting herself through that

much physical distress for a second time but she argued that her body would only

get worse and she needed to have her family while she was still able to be a

good mom. She was right and I am blessed with a daughter that had the strength

and desire to win that battle with me. I am also blessed with my two beautiful

grandsons. Things have progressively gotten more difficult for them but they are

a tight and supportive family unit. The rest is a sad, sad story. The heath care

system (Medicaid) has provided her through a pain management system,  a very

addicting regimen of drugs that we have come to know as a cocktail of opiates.

She has been running a vicious race for the past 10 or 11 years hopelessly

chasing pain medicine any way she could. Now at the age of 37 her elbows don't

bend so she can only feed herself with one hand. Her shoulders,wrists and

fingers have very limited motion. Her prosthetics have outlasted their projected

lifespan and desperately need to be replaced. Even with her limitations she has

continued to cook and clean and raise her sons the best that she can. What she

suffers the most with is residual damage from the arthritis because her RA

factor has been negative for about five years.  We, She and I, have asked many

times for a different way to help her but the doctors always tell us they are

limited by medicaid to do what is cheap and easy. My question is this, is there

anyone else out there that has any similar circumstances? I am trying not to

complain because she doesn't. But..... I CAN'T STAND WATCHING HER BE RESOLVED TO

THE FACT THAT THIS IS THE WAY IT ALWAYS HAS TO BE. I can not help believing that

there is no help for their situation. She needs and deserves a better way of

taking care of herself and her children. I think that the problem is that there

is not a special category that she fits in in the established systems. Her

situation may be unique but I know that she can not be the only one with this

problem. Possibly there is an inadequate amount of public awareness. People like

my daughter have silently taken no for an answer to long. She may be right when

she tells me that is just the way it is.  I believe in this great country we

live in but, I know there is a greater need for adults that were born with a

disease to have the right to a voice and not be stuck without.  She has

graciously given me permission to try anything that I can to get  a better

quality of life for the three of them but she says she has seen too many people

do without because of no one caring enough to get involved and the ones that

have tried to get involved  just get weary and plain worn out from running into

brick walls. She doesn't want me to let this run my life but I don't know

how NOT to try something else. There has got to be someone else that can help.

SSI is all she can get because she was completely disabled before she was

even out of high school. If she could work she would. Even if there was a place

for her in the job market  SSI would deduct  what she made from her benefits and

that could affect her medicaid. This fact I have been told  by many

agencies. Who, what and where are the agencies that fight for the rights of the

disabled? This message has many holes in it but I promise anyone, I can and am

willing to fill in the blanks if anyone cares to ask. Thank you in advance for

all your prayers and I would appreciate any leads or connections that  ANYONE

 might be able to share with me. I have even been considering finding a

journalist or reporter to bring these kinds of problems into the light. I am a

fighter and so is my daughter, she fights to get through her days and  I am

tired of hearing that her situation has no category or precedence. It is time to

find one or make one and I want to hear from any parent or patient that might be

experiencing the same kind of horrors. Equal rights are supposed to be for

everyone, aren't they?  Dr. Phill, Opra Winfrey, DR. Oz, Extreme Makeover Home

Edition, Habitat for Humanity,  Orthopedic Surgeons make  tv shows about these

kind of situations but they should not have to do it alone. We need to ban

together and create a category for persons like my daughter and your's. Mothers

I beg you, Father's I implore you, Writers I invite you, Grant procurers we need

you, Charities we want to help you to help our kind. Equal rights are suposed to

be for everyone. Aren't they?  i would love to speak with anyone of you that has

a desire to talk about any of this but for now I can only hope to hear from you

through e-mail. Thank you again, From a strong loving mother of a strong loving

mother and daughter. Sandy