[HubbyWithRSD]

I'm writing this thread because I feel that it is time that we all (even if you have already done it before) stand up for ourselves and our families. We need to speak up and out...

We need to get active! We need to write our senators, congressmen, all of our represenatives that we PAY and employ - It's time they WORK for US!

The rights of injured employees, the rights of patients, the right to have represenation, the right to have a TIMELY hearing and decision (NOT months AND even years later), the right adequate medical care and treatment, the right to be treated fairly and humane!

I've enclosed a list of sites where you can get your represenatives sites and contact information - I hope that each person here can write and tell them about the care and treatment (from all areas) we are receiving, compensations, social security, treatment, denials of representation, meds, etc.... I understand that for some it is difficult to write BUT if you or a family member can write just one and then copy and paste that (and just change the name), I think we can get our point across. That something MUST be done, Action must be taken, in areas of research, treatment, healthcare, compensation, etc.

I hope we can all take the time to do this.....

http://www.congress.org/congressorg/home/

http://www.house.gov/

President Bush's email: president@whitehouse.gov

http://4wheeldrive.about.com/gi/dyna...dbq/officials/

http://4wheeldrive.about.com/cs/ecol...rails4x4_5.htm

[frogga]

Hey!

Great Plan - I am from the UK - but i am due on the national radio station (BBC RADIO 4) to talk about this in the next couple of weeks...

Rxxxxxxxx

Wow, Rosie,

When? What programme? What time exactly, GMT? ....we can get BBC Radio 4 (and hear it live or recorded!!!) on the computer now, on the BBC Radio Player.
http://www.bbc.co.uk/radio/aod/mainf...o4_promo.shtml

That URL may be set for Hong Kong (which is where I live), but if anyone else is interested, it should get you close enough. You can get reception anywhere in the world.

How exciting!!! Bet you'll be brilliant (and we get to hear you sounding like the Queen )

all the best!

[HubbyWithRSD]

Awesome Frogga! It's good when people get active and speak out - Unfortunately our system is flawed in many different areas here in the US when it comes to workers compensation, attorney representation, some people wait months and even years to get their cases settled or decided upon.

Right now my husband is waiting on a WC judge to decide on his case. 5+ months now waiting on a hearing, our latest estimated date is in June of this year for a hearing - Thats only estimated (no guarentees) and would put us well over a year since he was diagnosed with his condition and just a "minute" of time into his care and treatment and hopefully eventual recovery.......

In Wisconsin an insurance carrier (from another state) was able to deny and decline my husband any medical attention/care and approporiate compensation (weekly monies/benefits) ALL based on the decision/letter from a Dr who reviewed only partial records AND worse yet has NEVER EVEN SEEN HIM! This "Dr." could not tell you what color hair or eyes my husband has, yet was able to be bought and paid for by the insurance carrier and gave the insurance carrier a letter stating that he was not injured at work.....Now my husband who has 4 Dr's stating that his condition is DEFINATELY work related/caused - these are Dr's who have actually seen him are being disregarded by the insurance company and they were able to cut him off with almost no notice (5 days) from everything. Currently we are fighting to see a WC judge, he is without ANY form of income - We are living off mine as a waitress.....Can this possibly be happening in the supposed greatest country in the world?? The United States Of America?? YES! We are living it....

We also have a great problem with adequate, approporiate, fair health and medical care where people are denied pain relief, denied diagnosis, denied treatment - How can this be possible. People who are active here are living this nightmare....When will something change??

How about the inadequate research and monies to fund research for RSD? When will someone stand up and say that this is a huge problem and it needs attention?? We dont need "spokespeople" (aka Paula Abdul) - We need action!

I think it would be great if people were able to speak out and write to anyone and everyone they can - Spread our stories world wide - We need some attention....NO ONE should have to live with the pain and agony patients and their families go through.

[frogga]

Heya -

that is very true......

Artist - I am going on to radio 4 to discuss university, disability and care... or something - I am terribly excited LOL..... (though will have to do the best I can to moderate my language - a swearing Queen wouldn't be good!!!)..... (I didn't realise how strong my accent was till I saw a video of me..... AGH! not good)... LOL ...never mind

It is unfair - the US welfare state is incredibly unfair - it relies on people having the money to have treatment - they appear to be too thick to realise that if you treat someone when they are ill then they can get back to work quickly - whereas if you don't treat them then they generally get worse, lose their jobs and then have to go on welfare benefits. I really think that your support for the next election should be behind (damn can't remeber his name --> ermm... his dad was from Kenya and he went to Harvard Law School) who procalims he wants to bring in something like the NHS that we have in the UK.

I am not saying the UK is brilliant - whilst you wait a week to see a consultant I wait 8 or 9 months - even as a blue light emergency you are rarely seen within a week unless you go through ER. I have waited over a year to see a neurologist before. Some people can be waiting years to get access to treatments - and even then there are rows if you go out of area about who pays for drugs, surgeries, equipment or anything like that. It is all based around an outdated labour PCT funding system which is bloody dreadful if you have a disease like this. The NHS are awesome when it comes to dealing with emergencies - but not long term degenerative conditions. When a adr says that you NEED to be in hospital he often can't find a bed for weeks as he will only be allocated 4 shared beds and my rheum always used to feel guilty that he couldn't offer the treatment I (and others) needed because of the bed space issues.

There has to be something which can be done about it - this is not a fair situation. If I had approrpiate treatment I might not be in the situatioon I am in today - and would have saved the govt $1000 a week in carers fees, at least $50,000 in equipment, and a likely lifetime bill of thousands more... But that doesn't occur to them.

In my case they are lucky - I am able to continue my education and I am planning to work after I get my degree - but the UK are making it as difficult as possible!. Once I earn over about $12,000 a year I have to start on paying for my own care and lose all my benefits (apart from the $600 a month DLA) - there is no way I can afford that! but at the same time - I will just have to get through it. My mother realised she would be better off giving up working (she works full time as an army sister (nurse)) and because of having a disabled daughter she would earn more money (through tax credits, housing benefits etc) than she does working.

How bizzare is that system!?!

Change is needed.... but at the same time - it has to be thought out.

Ok - well that's my rant on this over for a while!

Rxxxxxxxxxxxxxxxx

[dreambeliever128]

I agree that people should get active in getting the help they need and I have talked about it on here before about writing governors, Senators, State Reps, Vice Presidents, and the President.

A State Rep. helped me get my S. S. and a Governor helped me get my meds when my insurance didn't want to pay and the Vice President just got involved with my medication issue.

I think that people just don't realize how much help these people can be if they want to or if you get the right one.

I have never delt with the WC problem but I still think it is something that a person should get their State Reps. involved in.

They have helped me with every issue I have asked them to help with. IF they can't they will refer you to someone who might.

I'm glad you brought this up.

Ada

[HubbyWithRSD]

Originally Posted by dreambeliever128

A State Rep. helped me get my S. S. and a Governor helped me get my meds when my insurance didn't want to pay and the Vice President just got involved with my medication issue.

I think that people just don't realize how much help these people can be if they want to or if you get the right one.

Ada

Ada,

My husband has a question he wanted me to ask you - So far he has only been able to talk to assistants. How did you get through to these people - the actual representatives? Did you talk with them or just the assistants?