Advocacy for Patients with Chronic Illness, Inc.

[CC]

Where patients can get free information, advice and advocacy services in areas including but not limited to the following

How to get your own medical records.

How to get and keep health insurance.

How to get health insurance coverage for particular treatments, drugs, and/or therapies.

How to get private disability insurance coverage.

How to get Social Security Disability Income.

How to assert your rights under the Americans with Disabilities Act.

How to assert your rights under the Family and Medical Leave Act.

How to ensure that schools accommodate students with chronic illnesses.

And much, much more.

Link (http://www.advocacyforpatients.org/)

[fraulein_Maria]

Link (http://www.advocacyforpatients.org/)

The following is what i wrote to them and there reply:

Flag this messageRe: Patient RecordsSunday, July 20, 2008 6:22 AM
From: This sender is DomainKeys verified "jenniferjaff@<hidden>" <jenniferjaff@<hidden>>Add sender to Contacts To: fraulein_mt@<hidden>
Your gender has nothing to do with your entitlement to medical records. In
order to bring a class action, you need at least 40 people in the same
situation. That means you all have to be intersexed, have tried to get your
records, and been denied. Then you need a lawyer -- we don't do any
litigation. Have you contacted any of the litigation organizations that
focus on gender -- Human Rights Watch, LLAMDA? That's who's most likely to
help you with something like this. J
----- Original Message -----
From: "Maria T. Krasinski" <fraulein_mt@<hidden>>
To: <patient_advocate@<hidden>>
Sent: Saturday, July 19, 2008 3:47 PM
Subject: Patient Records


> Dear Ma'am,
>
> Though i write on behalf of myself, i also write on behalf of all those
> persons like me... who have trouble getting there records for the same
> reason i do....
>
> I am intersexed. Specifically, a XX CAH female. I am also a medical
> professional, so i know the song the hospitals are singing about "we don't
> have to keep them after 7 years" is horse manure.
>
> Of course they don't HAVE to. but they do anyway (as you and i well
> know) on microphish (sp?) and perhaps now on CD, against the day of a
> possible lawsuit.
>
> As an individual... i want my records. As an IS individual, i want to be
> part of a class action suit that includes all other IS individuals who are
> consistently denied the right to there records on a routine basis.
>
> You can find us @<hidden> http://www.bodieslikeours.org/forums/
>
>
> "If we do not demand unconditional respect for the
> inherent DIGNITY of EVERY human life, we undermine the
> foundation of democracy and grant the state authority over
> humanity that is nothing less than tyranical.
> The state exists for humanity, not humanity for the state."
>
> www.plagal.org

[fraulein_Maria]

[QUOTE=fraulein_Maria;15142]The following is what i wrote to them and there reply:

Flag this messageRe: Patient RecordsSunday, July 20, 2008 6:22 AM
From: This sender is DomainKeys verified "jenniferjaff@<hidden>" <jenniferjaff@<hidden>

In order to bring a class action, you need at least 40 people in the same
situation.

>>> so do we have at least 40 "mad as hell and aint gonna take it any more" USA intersexed persons?

[fraulein_Maria]

Flag this messageRe: Patient RecordsSunday, July 20, 2008 8:54 AM
From: "Maria T. Krasinski" <fraulein_mt@<hidden>>View contact details To: jenniferjaff@<hidden>
--- On Sun, 7/20/08, jenniferjaff@<hidden> <jenniferjaff@<hidden>> wrote:

> From: jenniferjaff@<hidden> <jenniferjaff@<hidden>>
> Subject: Re: Patient Records
> To: fraulein_mt@<hidden>
> Date: Sunday, July 20, 2008, 6:22 AM

> Your gender has nothing to do with your entitlement to
> medical records.

>>> Ma'am, i understand that is true legally. However, Intersexed people have been denied this right for a very long time now and it doesn't take much research to verify this claim. <<<

In order to bring a class action, you need at least 40 people
> in the same situation.

>>> Thank you. Difficult, but not impossible. <<<

That means you all have to be intersexed,

>>> which many of us need the records to prove in the first place. It is incredibly expensive to run the battery of tests necessary to prove this, incredibly expensive to find the doctors willing to run the tests, and our conditions make many of us too poor to do this..... its incredibly maddening because all those tests were ALREADY DONE when we were children.

Right now, the only proof many of us have is mysterious scars, phantom pain, and hormone irregularities that make life very difficult to live.

The lucky ones are those that have parents that were not ashamed of us and told us everything... as you can imagine, that's a rare bird.

Then there's those of us who fought the battle for self esteem well enough to do better than just survive... they made enough money to buy cooperative doctors.

Last, there's those who managed to qualify for SSD due to another condition, and had the freedom to just keep digging. This strikes me as a terrible waste of health resources... not merely redundant; but lost time, wages, entire lives only half lived (and that in sickness) not because our conditions are in themselves disabling.....

but mistreatment often is...(cosmetic surgeries that merely hide the problem) lack of treatment is ( too young burned out adrenals, too young osteoporosis, hormones so unstable that it affects our minds... and instead of the hormones we need... we get prozac. <<<

have tried to get your records, and been denied.

>>> both of those easy. <<<

Then you need a lawyer

>>> We know that. <<<

-- we don't do any litigation.

>>> that i didn't know. While it would be nice for me to have you throw a little lawyerly weight around to get my records for me ( others have managed to do this aswell ) I would burn with shame knowing that i had helped myself only... and left my fellows behind. <<<

Have you contacted any of the litigation organizations that focus on gender -- Human Rights Watch, LLAMDA?

>>> no. but its my understanding that others have, and have come up against those that mysteriously ENVY us..... <<<

That's who's most likely to help you with something like this.

>>> i will look into it myself. Sadly, i expect the same nonsense that others have gotton....

After all, its not enough to have our rights denied everywhere else....

MtF Transexuals invade our private on-line spaces 'posing as us, then revealing themselves when they tell us how they wish they had been LUCKY enough to have been castrated as children.

I have had my large clitero/phallus reduced by 2/3rds. I spend most of my days in excruciating pain. Unlike the MtF, i was not an adult... i was not given a choice. We are told by those who get to make love that we should be grateful to have been medically raped.

It is also hard to hear the nonsense spouted by Bisexuals...

I am not intersexed because i have too much test. running through me, masculinizing my brain.

I am intersexed because i do not make enough cortisol; my adrenals make test. as a substitute to keep me alive...... which then masculinizes my BODY..... not my heart, not my soul.

It does affect my mind. without cortisol replacement, the extra test. will make me aggressive, more lustful, and increase my appetite.

but these are NOT normal for me. I thank Godde every day for the day i finally was able to get cortisol replacement therapy.....

The aggression is now GONE. Lust and hunger have now been reduced to managable levels. I now feel like the woman i was born to be... 30 years of unnecessary suffering, ended. My CAH specialist was nearly in tears when he realized just how long, and just how much i suffered.....

All because of shamed parents, shamed doctors, and an obstinently paternalistic medical establishment that STILL believes.....

"They are better off not knowing".

[Kailana]

Are you asking for volunteers, fellow claimant's?

Cause you know I would volunteer in a heartbeat. I do happen to be one of the angrier IS individuals that post. maybe Hostile would be a better word. I am getting very very tired of hearing the same crap over and over about how hospitals have a right to withhold information they deem may be detrimental to us. It's not, it's detrimental to them, and they know it.

[fraulein_Maria]

[QUOTE=Kailana;15176]Are you asking for volunteers, fellow claimant's?

>>> damn straight. i do believe i said when i first came here that i was having a hard time getting my records, despite being a medical professional.....

its like being barred from your job because you became a customer! I can access the records of almost anyone BUT MYSELF! The irony is nauseating!

I suggested a class action suit could put a stop to this nonsense once and for all, but i got no takers then. Oh well. i was a newbie then, still under suspicion because my story had not been fully told, and no one had met me yet. c'est la vie.

Jetz KRIEG ist!!! :) <<<

I do happen to be one of the angrier IS individuals that post.

>>> LOL. lately you've rolled out the welcome mat to just about everybody. I was beginning to think you had a hidden new love, or were smoking some good stuff ;) ROFLMAO <<<

I am getting very very tired of hearing the same crap over and over about how hospitals have a right to withhold information they deem may be detrimental to us. It's not, it's detrimental to them, and they know it.

And when 40 are angry enough, we can approach a lawyer. <<<

[Kailana]

I do happen to be one of the angrier IS individuals that post.

>>> LOL. lately you've rolled out the welcome mat to just about everybody. I was beginning to think you had a hidden new love, or were smoking some good stuff ROFLMAO <<<

I really feel that no matter what a pserson is or what they have, or how they feel, when a person has question's about who they are, or what they have experienced, they deserve at least a friendly hello, and I hope if nothing else, that they at least feel comfortable enough here at BLO to speak/write openly.

I happen to like BLO because society isn't so nice to people who are different. Parents, doctor's regardless of how well meaning their intentions are, most of us know, what there decision's there advice, reccomendation's has interferred with our lives. I hope we at least have the understanding and the compassion that the rest of the world needs to learn. We are all unique people, and as people should be treated as how we see ourselves first, not how another chose to assign us. For all the new members, or the quests that read all our posts and thoughts, "they" should understand that at least here, are people who aren't as screwed up as doctor's say we are. We each have gifts and talents that others can learn from us.

For the intersexed people who aren't sure if they are I.S. or for the ones that just haven't been officially told that yes they are intersexed. Even for the ones who care for us, loved ones, family members, doctor's too. They all need to know that here at least, are people who have experienced some real crappy things, that other people have chosen to do to us, yet we still have compassion, we can still feel and care for others. It is not just about us as individuals. It is us as people, we are everywhere, in every society, every religion, every ethnic/racial group. We exhist and the medical community/society needs to know about us, what we have experienced, how we have managed to find ourselves, with all the crap we have had to experience. In the end, just learn that no matter what, we are who we because that is who we are, we are not labels, or condition's. We are people, just like everyone else. And even we, as a group, can learn from other's and their experience's.

Just a few thoughts.