WE NEED TO FIGHT! ARE YOU WITH ME?

[pgrimm]

I've been participating with you all for about two weeks now. I woke up this morning and I said I'm mad as hell and I'm not going to take it anymore. Yesterday I read Cat Mom2's post that she just fed up with the drug companies. I appreciated her every word, words that have really struck a bitter chord.

My Bill is a strong man, worked in the oilfields twenty years, even had his hand cut off and sewn back on. But the pain caused by this crap has broken him down to tears this morning, and I see him close to giving up. How long can people suffer this way, no sleep, no let up with the pain?

SO NOW WHAT? I see people here in pain, reseraching, typing their frustrations and anger, learning new ways to cope, but honestly, I'm not seeing any ACTION! What can we really do to punch the drug companies in the nose? Why does our FDA allow this to go on? Where's the compensation? Do we have to have a six-figure annual income to be worth of a lawsuit?

I read one post that asked if you would participate in a class action lawsuit? Is there one? Seems we have enough people right here to do something along those lines.

Honestly, I'm picturing us all collectively marching on Washington. HEY! We're babyboomers, who took on anyone and everyone to change the world, remember? Civil rights, Women's Rights, Vietnam, Martin Luther King, Gloria Steinem, where are our leaders AMONG US?

I'm thinking hard now, and when I get mad, I need to get busy. I'm not the biologist, not a doctor, but I'll tell you what, I've been known to be a fighter. I just need numbers, lots of us, and maybe some direction, then turn me loose, because I can't keep just sitting here sniveling about these damned doctors and drug companies and crying for each and every one of their victims!!! I gotta do something!

Please share your thoughts with me, I truly mean every word I say.

Pam

[uncle2blade]

Pam, I share your frustration, and I got mad to. I did my share of crying about what had been done to me, but know no law sute was going to give me my helth back. Don't get me wrolng if I were asked to join one I probably would. I had to trake responsbilty for gettin my health back. I fouind this sight a year ago and that is when things started to change for me. It hasen't been easy and there"s been alot of set backs but today I would say I'm 80% back; and I'm cofedent I'll make a full recovery. My advice is to turn Bill lose on this sight and read as much as he can, this forum is where I got the most of my strenth and hope. Thanks to everyone who shares, and thanks for your posts to Pam. Now get Bill envolved.

Craig

[pgrimm]

Thanks. Don't get me wrong, we are fully committed to getting him well. My focus is on stopping those greedy drug companies, not getting monetary compensation. But we all know that is the only thing that they listen to. I want to know how we can make the masses aware of the dangers of taking these drugs. I want to get our FDA to ban the frivolous use of statin drugs, or to at least make the drug companies provide supplements to take with them, and to be honest about the side effects. It's all about honesty, isn't it? If they were honest with us, "we" wouldn't be taking them in the first place! Now, seriously, what can we do to stop them? It's got to be more than just about the people they've already victimized, we've got to also think about the thousands of future victims out there!

I'm in mental health. I'm just now looking up my client's medications, so far, I've found three who take lipitor. I'll let you know how that comes out. I have about 100 chronically mentally ill in my care. I'll be damned if I'll look the other way while they are given statin drugs.

[cjbrooksjc]

Pam: First let me say: I will send you whatever you want in terms of information. Secondly, let me warn you that many of us have attempted to organize the myriad data into something usable and have been met with chirping crickets and other night sounds. I don't know why this is; only that it IS. I have made requests time and again for relevant data and have gotten no replies. I have contacted my congressman, the Senate Finance Committee, NIH, NIMH, the FDA, and Medwatch, and have gotten no responses at all, AND I have attempted to organize the information from our forum population, again, sadly, with no responses. I have learned to be insanely patient and wait for UCSD to publish their findings; regardless, I wish you good hunting... just be prepared, and let me know what I might do to help.

Regards,

Brooks

[Cat Mom2]

The problem IS, there is no way any of our problems were even admitted to by our doctors, much less documented. They were brainwashed by the drug companies free lunches and encouraged to not look into these onslought of new problems... and when they did, they couldn't find anything anyway.

After seeing my doctors reaction several times, I just quit complaining. I was either brushed off or given another drug more dangerous than the statin. When the memory problems started I tried my darndest to hide it. I was scared my kids would have me declared incompentent and God only knows what would have happened. I couldn't complain about the vertigo or stumbeling because of my medical insurance through the company I work for.. Why? Because I work on a BOAT! I would have been a huge liability to them getting on the boat like that.

I think our biggest bet is with our INSURERS! The people who end up paying these bills for these drugs and the problems they cause. That is who it is costing financially... but hay! Isn't this all about money anyway?
When I had to miss work because of my shoulder, human resources called, afraid I had hurt my shoulder at work and they would be liable. By the time I got done telling her about my experience and thoughts on statin drugs she didn't want to talk to me about it anymore. One of the deck crew on the boat I work on just had knee surgery for horriable pain in his knees.... he is on Lipitor! Company medical insurance paid for that surgery.

If we could get to the insurers somehow, I think that would start the ball rolling. I have to go next week to a company meeting and I am going prepared. The reason for the meeting is a "wellness check". I mailed them a packet of print outs in my questionair they sent me to fill out and I plan to take the latest printed out news that has come to light in the last few month, including one I found on tendon/statin drug connection. I guess I will do a cover sheet stating that I feel like I was cheated out of making my own choice to make an informed decision as to rather the benifits outweigh the risks for me on taking those drugs because of the side effects they hid from us.

If we all do that enough, it may get them to start thinking. Someone could contact CBS. Somebody, somehow has gotten CBS to thinking about the other side of statins, maybe we need to strike while the iron is hot! Hay, approach it by making the statement that the price paid by our insurance companies for the statin drug has a ton of hidden costs when the side effects kick in so what does it actually cost insurance in the end?

I am not good with words and never can get my point across so someone else who is a good talker needs to do it. I feel like if we can get anyone to listen, it will be Katie.

[pgrimm]

Dear Uncle2blad, CatMom and all,
I guess I'm a bit more of a radical thinker. Being from the sixties era, I'm thinking protests, sit-ins, marches, taking real action, being VISIBLE! I'm probably less civilized than you all. Let me give you an example. When my kids were in grade school, we hired a companty to build our pool. I was patient, but after 13 months, it was not even half built! Excuses, he was in a meeting, etc, was all I got. I got my kids and the neighbor kids to help me make funky bright posters for signs. I packed up a potty chair for the baby, and off we went! I instructed my husband that if they tried to arrest me, to call Channel 7 News (Los Angeles) and notify them, "Orange County mother and five kids arrested for picketing pool company". We picketed during rush hour for no more than fifteen minutes! That was all it took, and Mr. Invisible Manager showed up, ranting and raving! I told him Plan B, the tv news, and he went ballistic. However, he promised to have the contractors out every day until the pool was finished. 9 days later, we were enjoying our spa!

Bill and I are ready to do at least picketing at the VA outpatient clinic, who started this mess. Then I think I'll try the shotgun approach, contact every newspaper, tv and radio station, insurance companies, why not!

We are supposed to be getting phone call tomorrow from the VA to say if they will be admitting him to the La Jolla VA Hospital. We refused to allow them to put him in Los Angeles, and the Pts Rts doctor thought San Diego was a realistic option. And guess what, I contacted Dr. Golomb to ask if she would be his doctor. She emailed me back within the hour, on a Sunday night! Good person already. She said that she doesn't do inpatient duty until June, but that she would be happy to consult with the VA doctors, to give them her number, which I plan to do.

EXPOSURE. THAT'S WHAT'S MISSING! Yes, I too contacted my congressman, who's office says that they'll run an investigation. One person at a time just won't do it! I'm saying it will take numbers, lots of us, and if people like Bill are in just too much pain to take action, then what about loved ones? Are we going to take this lying down? I'm sorry, but I'm thinking of this is a form of a holocaust! Reacting to this medical maltreatment in a civilized manner is never going to be effective!

Look at the history of social change, someone did something drastic to get public attention. Once we have the public on our side, they'll have to do some explaining.

SO, yes, look to the past to what didn't work, and not try that again. Makes sense. BUT, I challenge you to think outside the box! Look at other movements for change, what did those groups do? We do need to organize. I think it's very unrealistic to make a difference one by one. Possible, but it won't get public attention, unless it's a gigantic lawsuit, not bloody likely!

I say let's take advantage of this election year. Hillary and Barack are both spouting that they will clean up healthcare, right? Well my friends, this sure needs some cleaning up! Anyone near a location where they will be speaking? I need some brainstorning here. Because I'm telling you, when I'm mad, I'm not going anywhere until I get satisfaction.

I'm on a roll today. I've been working on an injustice at work, and today I got satisfaction! At least a start on it, and it feels good.

All we have to do is make up our minds that we won't stop until we figure this out, and we won't take no for an answer. I offer you my tenacity, and I know I've got plenty. I need your support, your ideas, your gutts! Who else is going to take this challenge? It's got to be US! I see where a lot of people have viewed this thread. I want to hear from everyone who has been mad enough to read this!!!

[Dee]

Hi Pam,

You can do a search and sort through my postings if you wish. I too have tried to get "something going" from time to time. Feel free to use any of my ideas in those posts as you wish, if you find anything of value.

There have been many that have contributed much to our cause, for example Doc Graveline that has written 3 books, and maintains this site for all of us.

Also XRN, an amazing person from the U.K. that has created the "Investigate statins petition" and created a site of his own as well. And this is someone that became incredibly involved only because his doctor "suggested" he take statins....imagine that! Here is his petition site:

*http://www.gopetition.com/online/11757.html
Be sure to click on "signatures" and read the stories.

And XRNs site:
*http://talkingstatins.com/

Also on Yahoo groups, the Taking Lipitor and Hate It and Stopped Our Statins.

Maybe you already know about all the above, if not there is a lot of material for you.

I have been on a quest for statin justice for almost 4 years. I have seen SO many truly angry folks on many forums.

One thing to keep in mind, many of us have been so messed up by statins that we don't have the energy to help ourselves. Our health is destroyed and we are just trying to survive the daily aftermath. That is the paradox.

Thanks for your efforts, I hope everything starts to gel soon.

[mags]

I would love to but at the present I am just managing to make it through the day and don't have the energy to fight. Collectively you would think we could do it though! I am now having symptoms that are affecting every system in my body and am not sure where this will end up. If you can take up the cause that would be great!

[pgrimm]

Hi Dee and Mag. I sincerely appreciate your feedback. The information, which I will certainly check out, but more, I appreciate your position about needing to use your energy towards healing. I am here on behalf of Bill, who is in constant pain, and also unable to do more than his daily battle of taking his supplements, trying to get some sleep, and keeping his spirits up to want to live another day. Please understand, I would never expect hiim or you to do more than that, because I see him struggling to maintain a positive attitude. This is definitely a paradox, and a rather sadistic one, isn't it? The drug companies must realize this, if they are honest with themselves. They cause healthy people to become weak, and then they can't fight back. I'm so disgusted, I just want to know what I can do. I hate injustices, bullies, people who abuse their power. It's who I am. So now that this has happened to someone I love, I go into this fighting mode, and am looking for a way to channel my energy. I put out Bill's pills in a bowl, give him a big hug as often as I can, talk with him about what I've learned here, but then it's not enough. There has to be something else I can do to help. Call it survivor's guilt if you will, I"m not the one who is in pain, not physical pain anyway.

We tried to tell a woman in the ER that statin drugs were bad. She was in a wheelchair and had a bag of drugs she took, among them of course was a statin. She halfway listened, but then walked out with three more drugs, and I'm sure will continue to take her statin drug. So my point is, how can we convince people before it's too late for them? I am envisioning a huge population of the graying baby boomers walking around with canes, in pain, feeling so old before their time. Again, I just won't get discourged, I will find a way.

[valgators]

Hello pgrimm:

I wondered if the records of the FDA could be obtained under the "freedom of information act"? It seems like most agencies hold on to their information but it it's governmental, don't they have to comply with the FOIA?

Just a thought. Here's the address: *www.gwu.edu/-nsarchiv/nsa/foia.html This may be a way to start getting what is needed.

Valgators

[pgrimm]

valgators, I didn't have any luck getting that webpage to come up. I am intrigued by the approach you suggest, and will make some effort in that direction.

Okay, now we're cooking, keep the ideas coming. Hey, I'm 61, but when I get riled up, I still have some energy!

[Ray Holder]

A remarkable statistic is quoted in the Medical News Today link that jazzsbird quoted under "Statins may damage the mitochondria", where Harvard medical school, in their work on mitrochondrial damage, stated that about 1,000,000 Americans suffer muscle pains from statins.

This should add evidence from a reliable source to bolster up any argument on the reality of statin damage, and help the cause.

Ray

[Dee]

Hi Ray,

Even though 1,000,000 is a lot of folks, it is only 1% of the 100,000,000 quoted in the article.

I seriously question those numbers, just from talking to people in person that have had statin problems. I have no doubt the real numbers are much higher, more like 50% to 75%, an amazing amount of 50,000,000 to 75,000,000.

That defies all reason to me as to how the statin problem is being downplayed.

[gotts1936]

Pam, please beware of those on this website who may have an ulterior agenda regarding helping those damaged by statin drugs. I support marching on Washington, lawsuits and rolling back the drug company control of the medical "profession". But, I am sure the drug companies have individuals checking out this website and trying to keep us disorganized.

[cinbad]

I have noticed a few remarks about the insurance companies and the huge costs associated with statin drugs. As a result of taking Crestor and all the side effects of it my doctor practiced polypharmacy on me. At different times in the period of about 2 years. I was given prescriptions for Vioxx,Celebrex,Gagabentin,Tegretol,Arthrotec,Tylenol 3,Demerol,Oxycontin and Nexium. I stopped taking all prescription drugs in Jan 2007. I sent my insurance company an e-mail outlining all the problems I had as a result of taking Crestor and that I had quit all prescriptions after quitting the Crestor. Well guess what, I never even got an acknowledgement from them. Maybe the insurance companies are owned by the pharmeceutical companies. I'm saving my insurance company thousands a year and they could care less. Too bad they won't pay for all the vitamins and supplements that I now have to take to try and regain my health.

[pgrimm]

Exactly. I have a client who is mentally ill and on SSI and Medi-Cal. If his doctor is willing to take him off lipitor, then what, he can't afford to purchase supplements, he only recieves $110 a month after his rent is paid to the board and care. You would think that insurance would cover supplements which are so much healthier, saving them money in the long run! What a racket for the drug companies. Let's all hope that these presidential candidates mean what they say about improving our healthcare system.

I will consider myself warned.

[nanato3]

Pam, What about You Tube? It could make an impact as far as warning others who may be taking statins or are considering them. If we had enough videos posted maybe statin use will drop and also the drug companies stock. Had I known earlier, what I know now ( thanks to everyone on this board) , I would have NEVER started Lipitor. It is heartbreaking to read the stories, I am so sorry about your husband. Have him come here and read about others , I really believe it will help him. I thought I was loosing my mind until I found this site and discovered people with the same problems as mine. There is so much help available here.

Deb

[rockingrammy]

Insurance companies are a strange breed. They don't want to pay for our care but they don't respond when they've paid for something they shouldn't.

My husband's dr ordered a neck and chest CT scan to check the size and growth of his goiter. At the hospital they did a head and neck CT. A couple of months later we learned of the error. Hubby had to go back for the chest CT.

The hospital had billed and been paid by the insurance company. We were being billed for our portion. When I learned of the error I called the insurance company. The person I talked to acted like no one had ever called to report such a thing. I was surprised that they didn't seem too concerned. I was told I would have to contact the hospital and have them notify the insurance company of the error. Wouldn't that be like all of us telling the drug companies to tell our insurance companies that the drugs they made were bad for us?

Anyway, I contacted the hospital and had them check into it. Guess what? The radiology dept never let anyone in billing know that there was an error. It took a couple of months to get it all out in the open. I received an EOB from the insurance company showing all the charges for the head CT being reversed. In essence the hospital had to refund to the insurance company all the funds received for the neck CT and the head CT. They then had to refile for the chest CT.

[pgrimm]

Nanato3, YES!!!!!!

You Tube! What a fabulous idea!
I'm doing it. Imagine how many people we will reach? And right from the vistims themselves! People can send me their videotapes.

I will videotape anyone who is willing to tell their story and be seen by hopefully thousdans, millions. Lawsuit? Bring em on, I have nothing to lose. I don't own a home.

Thanks everyone for your continuing to brainstorm on this. If you keep the ideas coming, I promise I will follow through.

Bill goes to the VA hospital in La Jolla next Thursday, 3/13. He told the doctor who is setting this up that I have arranged for Dr. Golomb to consult. He was a bit surprised, then said he should have known we were a step ahead of him. Bill's feeing better just knowing that someone is finally is listening. They even offered transporation from Bakersfield to San Diego, some 300 miles. He told them I would be bringing him.

So who wants to tell their story? Send them to me, email me for my address.
.

[Cat Mom2]

What about making signs for our car windows? That is cheap to do and would cost very little but reach a lot of people. Just think, one car in a wal mart or grocery store parking lot and how many people whould see it. Put in the back window, any car following you would have it in their face and on long commutes to work.... Just need to work on the wording so it is breif but opens eyes! Suggestions?