The Pain Game: The Diary of Penny PuppetLegs

ANOTHER NIGHTMARE COMES TRUE

2012-02-04T23:47:00.000-05:00

Google Alerts ✆ googlealerts-noreply@google.com

4:57 PM (6 hours ago)

to me

News 2 new results for pain+law+drug

ON BEACON HILL: Senate passes legislation to combat prescription drug abuseWicked Local
By Anonymous With the abuse of prescription pain killers having reached epidemic levels in Massachusetts, the Senate unanimously passed legislation Thursday for strict oversight of the drugs, requiring a reduction in the supply of pills and mandatory ...
See all stories on this topic »
Again, my nightmare comes true. I haven't checked my email in a few weeks, and had no idea this was going on. I'm going to find out who is on the Hill. I need an apartment before March, and I have no idea how to handle both, especially without any support at home.

If anyone at USPF or in MA notice something like this, please call me and leave a detailed message. My phone number is on the side, and it goes directly to my cell phone.i'M GOING TO BED TO CRY. THIS DOESN'T AFFECT MY LIFE, EXCEPT SCARE EVERY SINGLE DR. AND PAIN SPECIALIST, INCLUDING MY CURRENT DR. I'VEBEEN WAITING FOR AN INCREASE FOR THREE MONTHS. I'VE ALREADY HAD A HEART ATTACK--ALL BECAUSE MOBILITY WAS STOLEN FROM ME, AND MY DOCTOR DIDN'T BELIEVE I'VE WORKED OUT ALL MY LIFE. THE CONDITION OF MY HEART SHOULD BE ENOUGH. NO OPEN HEART SURGERY IN MY FUTURE; ITWAS ONLY ONE TRIBUTARY.

MAYBE TOMORROW I'LL HAVE THE HEART TO READ THE REST OF THE ARTICLE...NO PUN INTENDED.

Eyes - Free Project by Google Android

2012-01-07T23:42:00.001-05:00

Check out "SoundBack"

Six related programs are available that interact with one another.
Other programs exist for use on the phone.
For the past 2 years I have been trying and comparing TTS and speech recognition programs for various devices and, soon, platforms. As soon as I am able, I will expand on this and list the best programs and the rest.
I am limiting myself to programs that are free or nearly free.
For now the link above will get you started.
My health is well. I am working out In the gym, and writing my posts daily. Now I'll be using speech recognition to enter the posts. You will see first hand what works, IMHO. This Post was produced by Android app blogger along with ( When I get online, and see that this works, I will reveal the program I used.
I hope to get back in the saddle again very soon.

Chillcrust Valley: Home of Short-Term Thinkers

2011-11-17T11:00:00.002-05:00

At Chillcrust Valley, we are allowed to smoke. Supervised smokers can only go out at specified times, and even though they should get 30 minutes, they barely get time to smoke two cigarettes. Independents like me can smoke officially between 9am and 2 pm.

The keys to get out to the Gazebo and smoking area are placed on a thick, long stick. There is also one that's shorter. Both have a lighter on one end, and the key on another.

The problem with the key is that someone is always taking it. Because management doesn't know how to deal with the problem, stealing the key compounds the problem, and lends a filthy smell of bad faith (which is fairly frequent around here.)

Maintenance staff usually have the key. It was after hours, but we found out that the Artist Known As Leimeister, a very talented painter, was still here. He was paged, and while my friend went to meet him at the access door, I finished talking to a staff member about what possibilities we could set up for the rest of the night, because the next day is The Great American Smoke Out, and I wanted to get my last cigarettes in. That particular staff person had no idea, except to page the Artmeister, something the nurses wouldn't do, although CNA's would.

So I joined my friend, who was already outside.

I said, "What did Leimeister say?"

"Nothing. He let me out."

"And what about tonight?"

"What about it?"

"Did you make arrangements for tonight," meaning, did he explain to Lee that he had the only key.

He looked puzzled.

I said, "You are a Republican, aren't you?

After a pause, I made clear that I wasn't talking about politics. I wanted to know if he had a party affiliation, that he was Republican.

"Why? How did you know?"

Now this is something I've learned from reading conservatives, and writing in Neo-Cons when only one person identified himself that way.

How did I know he was Republican?

Short-term thinking.

My friend the Republican should have made some kind of arrangement with the Last Key-Holder. Instead, he though about that cigarette and his need for it, and forgot others would need the key, or that he would need the key.

I think the lessons here are prima facie.

Talking Points & Issues in Massachusetts

2011-11-08T12:20:00.006-05:00

I know it's late to post this for this meeting, but I don't believe it's too late to read TALKING POINTS. In any case, as I've explained before, other states are going to be going through the same thing.VERY SOON

Maine, New York, New Jersey, California, Maryland, and Virginia are coming up very fast. Read the Talking Points because they are about the same in every state.

Massachusetts

The Specialty Bill in Massachusetts (S.455: An Act reforming insurance prescription fee practices) will be heard on October 25 at 1:00 PM in Room B-2 of the Massachusetts State House. The hearing is before the Joint Committee on Financial Services.

The Joint Committee will hear 28 bills during this hearing. If taken in order S.455 is 11th on the list so there should be sufficient time for all who want to testify in support of the bill to do so. I suggest that if you intend to testify, you should also bring hard copy of your testimony and/or email an electronic version to the Joint Committee chairs in advance of the hearing. Contact information for the chairs is below. In addition, attached are talking points that can be used to draft testimony.

Financial Services has scheduled a hearing for 10/25 at 1:00 PM, Room B-2, for the Step Therapy bill (S 422) for pain management. Please let us know if you would like to testify in person or help with information on submitting written testimony.

Please e- mail us at info@uspainfoundation.org

Please sent written testimony to both:
Anthony Petruccelli, Senate Chair:Anthony.Petruccelli@masenate.gov
Michael A. Costello, House Chair: Michael.Costello@mahouse.gov

TALKING POINTS

· Most people can't imagine what it would be like to wake up every day wondering how much pain you will have in the course of your day. Everything is a challenge: that first move out of bed, getting dressed, getting yourself to work. On the best day, you struggle through the pain. On the worst of those days, it hurts too much to move.

· But that is exactly what faces the millions of people living with chronic pain in the U.S.

· In Massachusetts alone, a recent study conducted by the MA Pain Initiative found that 24% of the general population suffers from chronic pain--that number more than doubles when you look at the minority population alone.

· As the President of the US Pain Foundation, I constantly hear from people who are hurting and looking for help. In the years since my own injury and since starting this organization, the calls increasingly are looking for help in accessing medications that doctors are prescribing.

· Why? Insurance companies are putting up roadblocks to prevent patients from getting medications that their doctors say they need.

The process is known as "step therapy" -but
what it really does is force patients to fail on a series of medications before the insurance company will agree to pay for the medications doctors have prescribed.

· Unfortunately, step therapy policies are driven by cost considerations rather than appropriate care. Patients with pain are suffering through the long and tedious process of trying medication after medication in order to end up at the treatment that was denied in the first place.

· I experienced it myself when...

· In too many cases, patients living with pain are forced to pay co-pays for the first steps of therapy and for additional medical visits, suffer physically because effective treatment is delayed, and tolerate side effects from inadequate medicines. The time spent by the physician, the pharmacy, and the patient, prescribing, filling, and testing medications equates to money spent and adds to the rise in health care costs.

· But, now we are starting to make progress on putting patients first. This month, a bill will be heard at the State House in Boston that will put limits on step therapy. Senate bill 422 will prevent insurance companies from forcing patients to fail on alternative medications or treatments before allowing a prescription to be filled.

· Our organization has been working on this type of legislation in other states, and in fact just this year, passed similar legislation in Connecticut. Even I was stunned at the outpouring of support from our membership across the country when the CT bill was passed and signed into law. Pain patients need help in fighting for what they need. This victory has served as a lightning rod for our membership, and we are determined to continue the fight in every state until pain patients are treated fairly by their insurers.

· As patients, the members of the US Pain Foundation understand the need for cost savings by the insurance industry. What we don't understand is how insurers can practice medicine and overturn the decisions of physicians. In doing so, the suffering of people continues for weeks and months at a time. It's literally like your doctor is saying, you need a prescription to be able to manage your pain, and your insurance company says-you have to try baby aspirin first.

· The insurers say that step therapy is a cost saving measure-but at who's expense?

· The US Pain Foundation urges lawmakers to support S.422 and stop the unnecessary suffering of thousands of residents of Massachusetts.

Our Fearless Leader, Paul Gileno, On TV

2011-11-08T11:56:00.000-05:00

You will see other videos pertaining to chronic pain after the segment of Paul Gileno. He explains 'Step Therapy' or 'Fail First, which is a tremendous obstacle. Due to the work of all our members, the Bill amendment against ST passed the CT legislature. Even though the insurance industry was over-represented, chronic pain patients in CT have won a very important battle.

Now we in Massachusetts are facing the same problem. No matter what state you are from, you can help by making phone calls, writing about your experience with ST, and so on. Every state will be facing this. The last post listed the Massachusetts issue: I will repost that. I had to tack it on my prior post, b/c I had problems with Blogger last night.

Medicare Cuts Are Dangerous for Your Health

2011-11-07T23:00:00.024-05:00

Below is an excerpt from an article from the Boston Herald.

Co-pay hike a painful reality
Miracle drug monthly cost jumps from $42 to $600
-
Ken Helgeson could be you.
The retired pressman from Millis worked for more than 50 years, sometimes two jobs, to take care of his daughter and his wife, Marion, a paraplegic as the result of polio.
Follow the link below to read the full article and comments.
By Margery Eagan
Thursday, November 3, 2011

http://www.bostonherald.com/news/columnists/view.bg?articleid=1377941&format=comments&cnum=2http://www.bostonherald.com/news/columnists/view.bg?articleid=1377941&format=comments&cnum=2
This article demonstrates only one of millions of people who will suffer because of Medicare cuts. I'm seeing the effect of the cutbacks up front and personal. Believe me, it's really disturbing.

I'm in a nursing home/rehab facility for about two months now. Medicare cuts are already affecting us. First, I'm paying more money to stay here per month. In physical therapy, if you miss three days in a row-- let's say Saturday, Sunday, and you feel sick on Monday -- well, that's just tough, because Medicare will no longer pay for your therapy, and you will be discharged from PT. Medicare pays for your stay in rehab in order to receive PT and any other care you need. So if you are not getting PT, you can not stay here, unless you are here as a nursing home patient for life, WHICH I WILL NOT BE.

In addition, staff cuts at Chillcrust are close to 10%, and after that first cut, there will be another 11%. This hurts every one, but mostly the people that do the majority of patient care. Kitchen staff, CNA's and nurses are the ones that feel the pain the most. That is, those that directly do the most for patients are the ones who will suffer. Administrators at Chillcrust remind me of Kafka's The Trial. Finding the Administration is like finding Waldo in Waldo World. You are led to believe it is one person. But that person isn't the boss. Legally, if you ask them, they have to tell you the name of his/her Supervisor. As one nurse put it, "there are ways around it." The bureaucratic layers here are like a rotting onion. You peel it back, but it's at the risk of tears in your eyes, and tears of the onion skin, which you can never peel back.

I'm diverting from the main point. Whether Chillcrust is top heavy is another matter, as unfair as it is. The main culprit in this is, I'm sorry to say, our President. In his continued spirit of compromise, he called for billions of dollars in cuts in exchange for support for his Jobs bill. And while I haven't had an update, I do know that the Rethuglicans will NEVER cease to refuse to do their job. They will NOT negotiate with him.

Everyone reading these words should think about getting involved, b/c this will affect every state in the Nation. Massachusetts is in a jam. It's important to get involved from all the states, but especially Maine, New York, New Jersey, California, Maryland, and Virginia.

Founder/President
US Pain Foundation inc.
P.O. Box 2182
Shelton, CT 06484

P:1- 800 - 910-2462
F: 1 - 800 929-4062
E: uspainfoundation@gmail.com
www.uspainfoundation.org

You may also visit us on Facebook. There is a link on the side bar.

www.invisibleproject.org

Also, check out the Invisible Project, at the link above, and on Facebook.

To my fellow Pain Warriors,
Pain Patients in Massachusetts are in need of our help. We had huge success in CT getting Fail First laws changed so people can have access to the medications their Doctors feel they need and not what insurance companies force us to have. Below you will see info on how to get involved in Massachusetts. We need to come together to show that CT was just the start and we will work to make sure every state have similar laws for people with pain.
I look forward to meeting all of you on October 25th when we come together and testify in MA. Please join me if possible.
Please watch this video about Step Therapy/Fail First:
http://www.youtube.com/watch?v=DdYav3WEg6k
Wishing all of you a low pain and high spirits day.
Thank you
Paul

Massachusetts
The Specialty Bill in Massachusetts (S.455: An Act reforming insurance prescription fee practices) will be heard on October 25 at 1:00 PM in Room B-2 of the Massachusetts State House. The hearing is before the Joint Committee on Financial Services.
The Joint Committee will hear 28 bills during this hearing. If taken in order S.455 is 11th on the list so there should be sufficient time for all who want to testify in support of the bill to do so. I suggest that if you intend to testify, you should also bring hard copy of your testimony and/or email an electronic version to the Joint Committee chairs in advance of the hearing. Contact information for the chairs is below. In addition, attached are talking points that can be used to draft testimony.

Financial Services has scheduled a hearing for 10/25 at 1:00 PM, Room B-2, for the Step Therapy bill (S 422) for pain management. Please let us know if you would like to testify in person or help with information on submitting written testimony.
Please e- mail us at info@uspainfoundation.org
Please send written testimony to both:
Anthony Petruccelli, Senate Chair:Anthony.Petruccelli@masenate.govMichael A. Costello, House Chair: Michael.Costello@mahouse.gov

TALKING POINTS

· Most people can't imagine what it would be like to wake up every day wondering how much pain you will have in the course of your day. Everything is a challenge: that first move out of bed, getting dressed, getting yourself to work. On the best day, you struggle through the pain. On the worst of those days, it hurts too much to move.
· But that is exactly what faces the millions of people living with chronic pain in the U.S.

· In Massachusetts alone, a recent study conducted by the MA Pain Initiative found that 24% of the general population suffers from chronic pain--that number more than doubles when you look at the minority population alone.
· As the President of the US Pain Foundation, I constantly hear from people who are hurting and looking for help. In the years since my own injury and since starting this organization, the calls increasingly are looking for help in accessing medications that doctors are prescribing.
· Why? Insurance companies are putting up roadblocks to prevent patients from getting medications that their doctors say they need.

The process is known as "step therapy" -but what it really does is force patients to fail on a series of medications before the insurance company will agree to pay for the medications doctors have prescribed.

· Unfortunately, step therapy policies are driven by cost considerations rather than appropriate care. Patients with pain are suffering through the long and tedious process of trying medication after medication in order to end up at the treatment that was denied in the first place.

· I experienced it myself when...*
· In too many cases, patients living with pain are forced to pay co-pays for the first steps of therapy and for additional medical visits, suffer physically because effective treatment is delayed, and tolerate side effects from inadequate medicines. The time spent by the physician, the pharmacy, and the patient, prescribing, filling, and testing medications equates to money spent and adds to the rise in health care costs.
· But, now we are starting to make progress on putting patients first. This month, a bill will be heard at the State House in Boston that will put limits on step therapy. Senate bill 422 will prevent insurance companies from forcing patients to fail on alternative medications or treatments before allowing a prescription to be filled.
· Our organization has been working on this type of legislation in other states, and in fact just this year, passed similar legislation in Connecticut. Even I was stunned at the outpouring of support from our membership across the country when the CT bill was passed and signed into law. Pain patients need help in fighting for what they need. This victory has served as a lightning rod for our membership, and we are determined to continue the fight in every state until pain patients are treated fairly by their insurers.

· As patients, the members of the US Pain Foundation understand the need for cost savings by the insurance industry. What we don't understand is how insurers can practice medicine and overturn the decisions of physicians. In doing so, the suffering of people continues for weeks and months at a time. It's literally like your doctor is saying, you need a prescription to be able to manage your pain, and your insurance company says-you have to try baby aspirin first.

The insurers say that step therapy is a cost saving measure-but at who's expense?
· The US Pain Foundation urges lawmakers to support S.422 and stop the unnecessary suffering of thousands of residents of Massachusetts.

* N.B. HOLD ON TO THESE TALKING POINTS, B/C THEY WILL COME IN HANDY WHEN WORKING IN OTHER STATES. FOR PAUL'S FULL TESTIMONY ON HIS CONDITION, LOOK BACK TO PREVIOUS POSTS.

My New Plea for Help on an Answering Service

2011-11-07T22:02:00.000-05:00

I've resorted to asking doctors for pay online to find a pain specialist. I know the barriers I'm up against. Once I find someone, I will explain why this has been so difficult. Since it involves legal matters and bringing someone to court for deliberately lying and violating HIPPA, I can't really discuss it. I was recently informed of exactly how egregious the situation really is. I knew this person sent out a multitude of reports, and up until recently, I was aware of 3 different versions. I've since discovered that there is a fourth, and the person placed it into a system that has nothing to do with me, or the person's work.
Below, you will find my latest plea. The first doctor gave me info on a place that no longer exists, but he was very good regarding his familiarity with the kind of problems involved. The second doctor passed, saying he was sorry, he couldn't help me.
Keeping in mind that they have a lot of information about me, I posted this question. Tell me if I'm saying something wrong.

Can someone direct me to a pain specialist, preferably in Massachusetts, that can handle medication management? Or someone specific at a pain clinic in Boston? My surgeon won't replace my knees unless I find someone for now, so that I can work out. In case the surgery is unsuccessful, he wants me to have backup for the rest of my life. I've tried injections and they caused more pain. I have Type I Diabetes for 3 years now, and have been immobile during that time due to a lack of adequate pain control. This resulted in a heart attack, but as I was physically fit most of my life, my heart is in great shape: I had a stent placed in a tributary. As a result, I am in a physical rehab center, and doing extremely well in physical therapy. The main diagnoses are endstage OA bilateral knees, Degenerative Disk Disease, Degenerative Joint Disease, Headaches and TMJ from Head Injury. My surgeon referred me to Bay State, but I don't have confidence in them. What about anywhere in the Albany area or Vermont? I'm allowed 60 miles on the other side of the Mass. border, including CT. However, I prefer Mass. because I have Medicare and Medicaid. If need be, please refer to my correspondence with Dr. T. He gave a great recommendation, but they no longer exist. I know this is a very difficult question, but I'm only 52, and I have much to accomplish before I go. Please take your time. I'm pretty busy right now, and will check back later in the evening.

N.B. If you are concerned about my character, I have roughly 10 separate listings in Marquis' Who's Who--you can't pay to get listed. (I would need time to find a copy. My PCP and surgeon both have a copy.) You may not think so, but this is life-saving information. I can find any surgeon to do it, but all they care about is their numbers, so they'd like me to live. As for quality of life, that four letter word, PAIN, is anathema, and doesn't exist in their vocabulary.

Now, the person I'm having legal difficulties with is NOT a doctor. I have no plans to sue, either. I know pain specialists won't take people who are litigious, and by nature, I'm not.

If anyone has any advice, I'd appreciate it. I thought I would have more time to take care of any business or work I had to do. Boy, was I wrong.

Update

2011-11-04T23:34:00.000-04:00

Most of you know I'm in a nursing home/rehab facility after a heart attack left me seriously weakened. I'm getting physical therapy, because I haven't walked in three years, for the most part. Because I had worked out all my life in one way or another, I've recovered fairly quickly. In fact, my PT instructor remarked that there is no way I'd be doing this well were it not for the fact that I ate well, and exercised vigorously most of my life.
I had begun treatment using diathermy http://en.wikipedia.org/wiki/Diathermy (from that page, you can get more info by following the links there. Also, the FDA has standards for its use.) My therapist is using it on one knee, with the other knee as a control so we can see if it's effective.

Update: Diathermy turned out to be a bust. I thought it would help not with the bone-on-bone pain, but maybe the chips that are digging into my flesh around my PCL. The bone chips have moved half-way down my leg, and half-way up my thigh. And my ACL is still unresolved, so my PCL is the only thing keeping my leg together.

That doesn't mean it won't work for you. There is an OA setting, and that setting applies a minimum of subcutaneous heat. If I didn't have the stent, I could have used it on my back. In another month or so, even though my stent is metal and coated with medication, I will be able to get an MRI of my back, and possibly use the diathermy to help with the neuromuscular pain, even though it is caused by Degenerative Disk Disease, there is plenty of scar tissue and injury, so I hope I can use it in a month on my back and neck. Please note that if the diathermic machine is not serviced regularly, and an automatic setting isn't used, you can be burned subcutaneously. On the wikipedia link, there should be a link to the FDA as well as the NIH. That has the amount of heat deemed safe for diathermy. Please make sure that your practitioner is using a safe level.

If someone offers it, try it. It has worked for people here that had bed sores tremendously well. Another person did get some relief from hip pain.

If you have a pacemaker, you can NOT even be in the same room with the diathermic device while it is being used.

Hope that helps.

The Louise Hay School of Medicine

2011-10-23T12:30:00.000-04:00

Before I came to Chillcrust, I had weekly appointments with my PCP. A few weeks before my heart attack, there was a youngish man sitting in his waiting room. I was early, and as is my wont, I had started talking to him. He had noticed I was in pain. So this opportunist started discussing U.S. Pain Foundation, and the additional dimension we add to the discussion on chronic pain, as it is first-hand accounts. (We are all former or current pain patients.)
He replied, "Oh, I've had pain for years. But I've learned to deal with it."
Of course, my response was, "I'm happy for you. You know that all pain is not the same, and every one is different, as is their experience of pain."
He pointed to his head, and said, "It's all up here."
Just then, I was called to see my doctor.
When I was just about to walk out the door, the patient in the waiting room said, "Just be a good person."
"Excuse me?"
"Just be a good person, and the pain will go away."
I had to give him one of my lil John's, 'WHAT?'
He stared at me, and I walked out the door.
The incident reminded me that Louise Hay's books had been republished. You know, if you have pain in your lower back, it means you are worried about money. She had a section on AIDS, and it's cause had nothing to do with HIV, but rather....you know, at that time, I had five friends with AIDS, and they read this trash. It was so insulting to their character, and I begged them not to pay attention. Still, a lot of people who contracted AIDS or HIV through no fault of their own, read and believed this stuff. It was something they felt they could understand and remedy.
FACE IT. SHE'S A QUACK, AND A DANGEROUS ONE AT THAT. HOW SHE GETS ON THE NEW YORK TIMES BEST SELLER LIST IS FOR ALL THE WRONG REASONS.
I put Louise Hay in the same category as people who try to build a 12-step contruct for chronic pain. What, tell people they are powerless to control their pain? Aside from 12 steps being a closed system (which I'll address when necessary,) I think that is the most harmful thing you can tell someone in pain.
If this guy in the waiting room is naive enough to think bad things only happen to bad people, he has a sad awakening in his future, when all his "goodness" doesn't help him after he gets hit by a bus.
I'm just sayin....

Quarantine a la Florentine

2011-10-22T22:52:00.002-04:00

For the past three weeks, we've been in quarantine--well, sort of, anyway. It was enough to keep us off kilter, kill plans to escape to the movies or shopping, and have the rest of the residents to fear us.

The quarantine began with a runny nose in Unit 3. (There are five units.) Others in Unit 3 developed the flu. Soon, my Unit, Unit 2, was also quarantined. We wore masks on the Unit. Those without symptoms and were independent were still allowed to smoke during smoking hours (between 7 AM to 9 PM,) but we were warned: Take off your mask before you smoke, so that you don't burst into flames (thank you, I was worried about that.) Furthermore, stay six feet away from other people, and do not go any where else in the facility.

I'll leave it to you to figure out which group I'm in. And whether I broke any of the rules.

So far, so good, right? Wrong. Staff went home. Visitors were warned but permitted to visit. For a proper quarantine, it should last for seven days.

Which all begs the question: What are the rules for a proper quarantine. Well, I don't know, but this was NOT it.

It last five days. The sixth day was free: No more masks. But the seventh day, it was back on again. Next day off, the next day back on. Then, off, back on but with a new dimension: Residents with symptoms of the trots were quarantined. Pretty soon I lost count.

My physical therapist came down to my Unit. In the room we were sitting in there were a stack of papers. N.B. I take total responsibility for snooping. My PT had NO idea. The day after the first quarantine, flu shots were scheduled.

I had symptoms, but I knew it was my allergies. They didn't believe me, even though when I went outside, the allergies would be full blown. When it rained, no symptoms at all. If I don't take care of them, a runny nose and eyes turns into full blown bronchitis with 104 degree temperature. My PCP, true to his nature, would not give me what I use twice a year when in the Berkshires. So, in the interests of my own health, I had to take matters into my own hands. 'Nuf said.

Finally, my honor was restored. Someone checked my records. I knew I had been given a 2nd pneumonia vaccine (finding them outside of the hospital is a post in itself.) What I didn't remember is that I had a flu vaccine. They discovered this just in time for the second transmittable disease.

When I was first told--by friends by the way, not staff--they explained that this quarantine was for a stomach flu. "So, what, they are going on Poop Patrol?" My friends assured me no, but I think you can see why I would suspect that.

Another amateur hour, part of Medical Clown Town at Chillcrust Nursing and Rebab Center in Flink Township.

If you'd like to read one of the most popular books on the Plague, see Wikipedia entry for a synopsis here. http://en.wikipedia.org/wiki/Summary_of_Decameron_tales

The Decameron,written in the 14th Century, was about 10 people who fled Florence to avoid the Plague. They entertained themselves by telling 100 stories--10 people in 10 days.

The first paragraph makes the Florentine reference clear. I really could come up with my own version of the Decameron, b/c so many people used this for their advantage and disadvantage. It affected all residents here. That's where the truly funny stories are.

Before beginning the story-telling sessions, the ten young Florentines, referred to as the Brigata,[1] gather at the Basilica di Santa Maria Novella and together decide to escape Black Death by leaving the city to stay in a villa in the countryside for the next two weeks. Each agrees to tell one story each day for ten days. The stories are told in the garden of the first villa that the company stays at, which (although fictional) is located a few miles outside the city.
Under the rule of Pampinea, the first day of story-telling is open topic. Although there is no assigned theme of the tales this first day, six deal with one person censuring another and four are satires of the Catholic Church.

So what does the 14th century story have to do with our quarantine? They are exact opposites. In the story, 10 people quarantine themselves by getting out of Dodge, and thus saved themselves from the Black Death. Here at Chillcrust Valley, the quarantine left, or more accurately, was improperly administered. This left not only the residents in danger. If it were the Black Death, who knows how many people would be infected by now. I'd take the 14th century conditions any day compared to the inefficiency of this, rather these, multiple quarantines. (I began to think they were tossing a coin every day!)

A tremendous amount of literature, movies and other creative arts are dedicated to the disabled and the chronically ill. Think of Robin Cook and the ethical questions his mysteries raised, such as in Acceptable Risk. My Left Foot, the book and the movie, inspired me to create a slide show depicting my Right Foot, as it's become deformed.
Albert Camus' novel, the Plague, is easier to read, by no means less compelling. It's central character is a doctor, and the stories are about his interactions with his patients, and issues of humanism. I'd love to sprinkle some reviews about how we are depicted in popular culture.

Any other suggestions about literature or the arts regarding illness, disability or pain? I'd like to put a list up, but you are more than welcome to review any creative effort. Current authors, artists, and movie buffs, feel free to send in a post with your contact information. I have a pile of books at home, but won't have time to read them, or retrieve them.

Thanks to Victor for suggesting the title.

Medispeak, Medithink:COMING ATTRACTIONS

2011-10-13T05:11:00.043-04:00

Medispeak, Medithink Are EQUALLY Dangerous.

Medicine didn't escape the plummet of social converse in Orwellian misinformation. I haven't read Orwell in more years than I care to admit, but I don't think he said anything explicit about medicine and a mystery language, along with pure "medithink, For example, if you are under the care of a pain specialist, and he puts you on Avinza or Kadian, longer acting types of morphine, or short acting, as in Immediate Release, (IR), and you take it as prescribed, this does not make you an addict. It makes you "dependent," and if you weren't dependent, and you've been told to take your meds daily, that is a bad thing. You should be dependent. Some doctor may one day say, "You are an addict," tell him or her you are dependent. And if the doctor says, "Oh, it's a matter of Semantics," then you have that doctor by the short and curlies.

It IS NOT A MATTER OF SEMANTICS. THE DSM- 4.0 ST
has seperate code numbers between addiction and dependence. If you are addicted, you sell your medication, trade it for street drugs, or take your months supply in the first few day. DEPENDENCE means you take your medication as your doctor prescribes it. There is also a third category, the person who is undermedicated, and will go to the streets or engage in some bad behavior to get properly medicated. That's really the result of incompetence, unwilling to risk giving the proper dosage, or someone who is truly not schooled enough in pain to properly medicate you.

Medispeak and Medithink go much further than this. My recent 'match' with my endocrinologist* proved that at least in the management of type I Diabetes and hypothyroidism, only numbers matter, not individuality. The truth of a real live person makes things "messy," as human beings don't always fit into the medithink and speak of numbers.

The existence of a separate universe where in medical care is routine, and can lead to issues and decisions made, hastening the patient's death. Unintended consequences are frequent, but I do know some professionals see clearly how others screw up, and, at the same time, these "others" think they have a "talent" for what ever it is they do. One IV nurse said to me, "I repeatedly see people doing awful things to patients, but they still believe they are "born for this." And I think to myself, 'Don't you see what you are doing to your patient?'"

I have encountered enough of this to fill a book. In the next few posts, I'm going to talk about the rejection of the common place idea that "every patient is different." This is clearly not the case in endocrinology. Diabetics and others with thyroid problems (both of which have a critical effect on chronic pain) will be shocked at what one told me. Other examples that I've seen are usually rooted in CYA; like every where else, everyone is afraid of being laid off, b/c Chillcrust Arms has been letting people go. These posts are already written; I just need time to type them up.

The really interesting stories here are the residents. There's a Sherriff that I had no choice but to placate, b/c I can't stand being in a tense environment. It was taking too much of my time. Then, one night, the sheriff took it too far, and I said to myself, "I don't have time for this nonsense." This post will be the most common type in the next couple of months I may be here.

I had mentioned to Melva Smith, a member of USPF, that every pain patient I've met has been accomplished in at least one area. Most of the people with pain were driven, ambitious, and competitive with a lot of responsibilities. And that's exactly what Melva said: We are all Type A people. I think now that some people forget that whatever your background was, it won't help you much, unless you have better than average health care. Some other people stay angry, and feel they need to control the lives of others. As many individuals there are, there are personal ways to deal with the grieving process over the decline of your health.

* murder by numbers, 1-2-3 is the post on my endocrinologists, who has me taking insulin when I'm down to 70.

FAIL FIRST ALERT: STATES CURRENTLY VIP

2011-10-05T21:27:00.000-04:00

Our fearless leader and Director of U.S. Pain Foundation, Paul Gileno, sent out this email in the hopes of getting more people involved in our efforts to eliminate Fail First. Fail First means that when your doctor decides on the best medication for your pain, your insurance company insists that a lesser medication be tried first, as if insurance executives and the doctors that work with them know better than your doctor.

Say your doctor prescribes Oxycodone. The insurance company will say, "Why don't you try Vicodin first?" Acute and Chronic Pain Patients should not have to endure this. It is for this reason we are working within the legislative process, state by state, to eliminate this. [I hope to be able to do something for a day or two in Massachusetts, although my time is taken up by PT, finding new digs, and applications. My PT person understands my need to do this, so we are changing my workout time so I can participate in this push. She's very good: I call her "Eagle Eye," b/c at times, when I cry and think I'm hiding it, she can tell!]

Below is the entire text from the email, listing the states' and what is necessary in each. Remember you can help even if you do not live in that state, whether it's phone calls, emails, etc. Also remember to keep a log of your activities for Dee: She is now collecting that info quarterly.

To my fellow Pain Warriors,
Pain Patients in New Jersey, Massachusetts, Maine and Maryland are in need of our help. We had huge success in CT getting Fail First laws changed so people can have access to the medications their Doctors feel they need and not what insurance companies force us to have. Below you will see info on how to get involved in New Jersey, Massachusetts, Maine and Maryland. We need to come together to show that CT was just the start and we will work to make sure every state have similar laws for people with pain.
Please watch this video about Step Therapy/Fail First:
http://www.youtube.com/watch?v=DdYav3WEg6kWishing all of you a low pain and high spirits day.
Thank you

Paul
About U.S. Pain Foundation
Founded by a fellow person with pain, U.S. Pain Foundation understands the challenges and struggles those with pain endure. Our mission is to empower, inform, advocate and support the 116 millions Americans living with pain. Built upon the belief that connecting with others who share the same frustrations and dreams of recovery is important, our goal is to bring the pain community together, so we all find the help, resources and strength to move forward.

Massachusetts
Financial Services has scheduled a hearing for 10/25 at 1:00 PM, Room B-2, for the Step Therapy bill (S 422) for pain management. Please let us know if you would like to testify in person or help with information on submitting written testimony.
Please e- mail us at info@uspainfoundation.org
Maine
The specialty tier legislation has been filed in Maine under Representative Stacey Fitts name (bill number is forthcoming from the state). The bill is being filed as part of an emergency session. Only 175 bills will be considered during this emergency session. The Maine Legislative Council is scheduled to meet on Monday, October 31 to vote on which bills will be allowed for introduction in the upcoming emergency session.

We have until October 31 to reach out to fellow advocacy organizations and patient advocates living in Maine to make them aware of the bill and its importance to precluding the use of specialty tiers in Maine. We must notify them of how critical it is for them to engage Legislative Council members and tell the Council why precluding the use of specialty tiers by insurance providers in Maine is an emergency.

Case in point, I have dealt with a hemophilia patient in Maine in the past few months whose medication was moved from major medical to an "injectables tier" for which there is a co-insurance payment.Consequently, his co-pay no longer applies and he must now pay a co-insurance rate of 33%. For him, this could mean up to $80,000 annually in out-of-pocket cost.

I do not have a copy of the bill yet but the bill is similar to the language in the Vermont specialty tiers amendment which is much like that of the New York specialty tier bill that passed last year. Please let me know if you need the VT or NY bill language.

We need to generate calls/emails/letters to the Maine Legislative Council (links below with names and contact info) in order to engage Council members in advance of their meeting on October 31. I have attached talking points about specialty tiers to be used to create a sense of urgency as to why the specialty tiers bill warrants being part of this emergency session.

I am preparing a sample email/letter/call crib sheet to share with New England Hemophilia Association members. Members can add there name, address, a few personal sentences to this document, sign it, and send it to the Legislative Council directly. Please let me know if you would like a copy of this document to share with your patient advocates.

Posted on the NECAPD web site is additional information and news articles on specialty tiers, http://www.necapd.org/resources.html.

Maine Legislative Council Members
http://maine.gov/legis/execdir/Member%20Profiles.htm

Senate Leadership
http://www.maine.gov/legis/senate/Leadership.html

House Majority Office Leadership (Republican)

http://www.maine.gov/legis/house/maj_main.htm
For more infiormation please contact Wendy Owens at wowens@necapd.org
NEW JERSEY
We are pleased to report that the News 12 NJ segment on step therapy with Assemblyman Conaway and Paul Gileno aired eight times over the weekend in NJ. Both spokespeople did an excellent job explaining the importance of the bill. One of the major points made was that doctors need to be the ones calling the shots when it comes to prescribing medication, not insurance companies. Overall, it was a great segment.
Please click on this link to download the file:https://rcpt.yousendit.com/1243729040/3c6699a6e0e1a0f192a61a93376def13

Please click on this link to download the file:https://rcpt.yousendit.com/1243729040/3c6699a6e0e1a0f192a61a93376def13
We need you to get involved in New Jersey please click GET INVOLVED

Maryland
We need more patients in Maryland to get involved. Please contact us at uspainfoundation@gmail.com or click GET INVOLVED

N.B. Posting is extremely difficult due to a slow wireless connection. I've found a way around this, but it will take at least a week to set up. Thank you for your patience.

"i'm sicker than you are!" Inane vs. Fruitful Competitions

2011-09-17T17:14:00.015-04:00

"Triumph Over Pain: Run, Walk, Roll"
September 24, 2011

Rockport, Massachusetts

I've never encountered before: People actually competing to prove they are the sickest. Perhaps this is a common occurrence in a rehab facility, but I don't think so. Not only was I a "wus" at having a head injury, but while the person's dx was much more serious, her current condition wasn't. And yet she was much sicker than me.

I asked someone to show me where the kitchen was. A person sitting nearby said "You don't need anyone to show you where the kitchen is." I explained that I have a head injury and I sometimes get confused With directions.

"My brother had a head injury," she said. He fractured his head in three places and he was just fine." I had only one fracture. I tried explaining that All head injuries are different.

She wouldn't have Any of that Her brother was clearly much better than I was. He would be able to find the kitchen. (I wondered how, since he was dead.) There was nothing more to say to this person.

Later, she raised the stakes to a whole new level.
"My pain is worse than your pain, and I'm only taking Tylenol." She said she had RA.. Pain is subjective, but RA is still quite serious.

I explained how the APA describes end stage (severe) OA pain as being similar to bone cancer, but told her while I didn't know that was accurate, I had an idea of what she went through, though. That seemed to soothe her. In spite of her competitiveness, (or solipsism) she STILL had RA, and I am not belittling that. I just don't find anything useful in that kind of behaviour, unless you are in an ER, and that decision is made by the doctor. (Unfortunately, many doctors still think "Pain doesn't kill you," and can be dismissive. We know all about that, don't we?)

I have a bone scan on Wednesday." I told her I had to reschedule my bone scan.

"Oh, I get a special bone scan." I said, yes, I know. She insisted that her bone scan was much more serious than mine. Of course, it's the same scan. A nurse put that to rest.

Another form of this competition Is when someone who is relatively healthy has an accident and hit their funny bone. I know that hurts like hell. I had someone insist that they're playing was worse than mine because "you are used to pain because I'm in it all the time." I didn't deny that he was in pain, but his was more significant than mine. e was.

Inane? A waste of time? Negative energy. I think so,.You decide.

INSTEAD OF THESE FOOLISH MEANDERINGS, LET' FOCUS ON THE POSITIVE THINGS WE CAN DO AND TALK ABOUT.

If you are looking for real competition With other people like us in the chronic pain community, GO TO ROCKPORT.

IF YOU CAN'T ATTEND, LEND YOUR SUPPORT BY SIGNING UP AND VIRTUALLY ATTENDING BY USING THIS LINK:

http://myemail.constantcontact.com/Join-US-Pain-for-our--Triumph-Over-Pain-Run-Walk-or-Roll-.html?soid=1103157487426&aid=nj7UkLpXeeQ

The U.S. Pain Foundation is sponsoring this multi-organizational event. Please go to the link above. By registering--even if you can attend virtually--you'll receive a goodie bag! You will find all the details you need to help us all make this race a success!

N.B I am relying on a very SLOW wireless connection; posting most of the time is almost impossible.

Skip Baker: Persecuted Pain Patient and Activist

2011-07-30T22:29:00.001-04:00

This is a direct quotation from Skip Baker, President of American Society for Action on Pain (ASAP.) I've been hearing about Skip Baker since the early 1990's. Before writing what I had heard, I'd like to clarify some details with him. For the past year, he's been waiting for the State of Virginia to classify him as a chronic pain patient in need of medication for life, but there's a phrase for that.

I was surprised to find that he is still with us. The story of Skip Baker, the harassment and persecution from the FBI, the DEA, and Virginia, is a long tale, and I think it's best he explains parts of it himself. I'll be putting together a series of posts on both Skip Baker and Dr. Hurwitz, who was also targeted over the past 25 years. I've known about both of them primarily through people who knew them. "60 Mintues" did a portrait of what Hurwitz was going through 25 years ago. Below, you will find Skip's general take, a view maybe understood only by other chronic pain patients.

Everything below this line is the intellectual property of Skip Baker. The links are functional, so if you don't want to wait for me to write it up, you can look it up. I'm not sure when this was written. The actors may have changed, but our plight remains true today.

State and DEA Tell Pain Patients to "Drop Dead"(Photos and graphic by Skip Baker, American Society for Action on Pain)One of the saddest and least noticed consequences of the war on drugs is the under-treatment and non-treatment of chronic pain. Literally hundreds of thousands of patients endure needless agony -- in some cases turning to suicide for relief because they could not find a doctor willing to prescribe adequate doses of narcotics for them. The problem is two-fold: widespread ignorance on the part of physicians on chronic pain treatment and unreasonable fear of causing addiction; and a threatening law enforcement bureaucracy that can ruin or even incarcerate doctors whom they see as being too liberal with their prescriptions. These two factors play into each other to perpetuate a situation in which denial of pain relief is standard practice.

I have more, but I don't believe in just re-posting without permission. You also wouldn't get what I know from others about this particular circumstance.

I do know in the mid-1990's, it was the FBI and White House Drug Czar that eliminated all pain specialists in one way or another (see previous post.)

I think it's a miracle Skip Baker is still alive.

Language Defines Reality Too Fearful to Face

2011-07-29T19:22:00.030-04:00

From Things You Should Know series

I'm listing something from Jenni Prokopy hopefully tonight, on a phrase she uses, to submit to Urban Dictionary. (I can't tell you what it is until it's a sealed deal.) I brought up the idea, the necessity, of developing a full dictionary around pain. While it's ambitious, and a long-term project, the point is that language shapes the perception of what is being discussed. By Following the link, you'll find a recent effort in this direction.

This is very true of politics in general: A professor in Colorado wrote about the 1994 "Contract ON America," which is how I see it. -- once I get it into the dictionary, I'll write a post. So, when a doctor says you are addicted, and you reply, I'm dependent, they say "semantics." Well, it's more than that, b/c since DSMIV-ST, the distinction is real; there's also a category for people undermedicated like me, who seem to be engaging in addictive behavior for doing something like, turning to the streets, where there is a likely chance you will accidently kill yourself. The pain patient seems to be engaging in addictive behavior, but in fact, is self-medicating, b/c the doctor dropped the ball.

I have a colleague whose boyfriend was trying to help, but they didn't know what they were doing, and she died. I cried (I was in the library and got the email there; somewhat embarrassing) but it hurt. Six months earlier, a group of us were working together, trying to save our doctor from an obvious attempt by the FBI to destroy him, even though he was guilty of nothing. Some gallows humor brought up the subject "How long before one of our doctor's patients die when he can no longer practice." It was sooner than anyone expected. To have Ora die that way, after we all discussed this as an inevitability, hurt so much, and it still does.

I'm sure the uninitiated are saying, "Why didn't she go to another doctor?" "And the ED?" The answers: Within four years' time, the FBI shut down 5000 pain specialist offices. The White House Drug Czar at the time claimed that every single one was either trading drugs for sex, selling scripts, all kinds of illegal activity. I know for a fact it's a lie.
The Emergency Departments? NO. Ora had an additional accident (very easy when you are not running on all cylinders,) slipping on ice. That second trip, again, she was sent home.

"Oh, this can't be true. She must have been an addict." Friends of Chazz, who's been taking care of me for two years, a lot of them are doctors. They said the same thing. "Chazz, drop her at the hospital and say she's your problem." "Bring her to the psych ward. They'll put her in a state hospital." Unfortunately, that's where most chronic pain patients end up, even when you obviously need surgery, and your condition is something they can't ignore. Then they tell you--before they know you--"We're taking you off this and that." They have no idea WHY they you are on it, but THEY DON'T LIKE IT. And then, they pull a number literally, (and I hate using this phrase,) RIGHT OUT OF THEIR ASSES. It's an important phrase to use, b/c, for example, I've been told, "90% of people who take that get addicted." The true number in this case, and I had the Head of a local hatch admit it: "Yes, addiction rate is 5%."

I'm sure there are people out there that still don't believe it. You probably don't believe that family members will call you drug addicts, and, YOUR LOVED ONES WILL TELL YOU TO KILL YOURSELF." I'm sure at least one person reading this knows for a fact this is true. This is why. Every one around you is telling your family, "I don't know how you put up with that. Admit it. He/She is an addict." The family, who are the usual caretakers? Doctors don't think about their frustrations. So they come home, tired from the Necessities of their lives, and...IT HAPPENS ALL THE TIME.

So, when I talk about the Necessity of Changing Language, what I am really saying is, the clear reality is negated out of fear, and language of addiction. We need our OWN language to describe the reality that no one can face. Only by making it more than mere "semantics," it's the truth.

Never mind that these people insult my intelligence.

http://www.eurekalert.org/pub_releases/2011-07/uab-thd072611.php

American Association of Pain Medicine

2011-06-20T22:51:00.002-04:00

State by state legal regs involving opiods, you can get there from USPF, or go to http://tinyurl.com/3ldxm33

A Guide to State Opioid Prescribing Policies | Medscape
www.medscape.com
A Guide to State Opioid Prescribing Policies Too many rumors going around. Check your state for the real law. THIS LINK CAME FROM USPF. THERE IS A TON OF INFORMATION ON THE SITE; SO GO THERE! THE LINK IS EVERY WHERE ON THIS PAGE.

The Humbling River: Must Listen to Entire Song

2011-06-07T22:52:00.000-04:00

This song, I think, is a perfect rallying song, especially the second half.

If or When You Go Into the Hospital

2011-04-13T03:50:00.001-04:00

More people die from medical error than motor vehicle accidents. Here' s list of 20 tips of how to prevent medical errors, like making sure they don't work on the wrong leg! From the Agency for Health Care Research and Quality.
They will also have links to websites where you can compare outcomes from different hospitals based on your procedure.

http://tinyurl.com/37wxfj

Wheel of Misfortune: A Letter to the Senate on Chronic Pain Patients

2011-03-29T23:16:00.001-04:00

Please sign the petition at http://www.chronicintractablepainandyou.org/ Dr. Patty Hagler-Verdugo

After putting in your particulars, there is a space for a comment, and here's mine:

Why is this important to you?

I have endstage OA, and need knee replacements, possibly followed by hip replacements. Two years ago, I developed Type I Diabetes, and a long list of diseases related to that. I became too sick for my pain specialist, and he dropped me as a patient. I've been living on a 1/3 of my medication, not able to exercise to improve my surgical outcomes, and as I've become more disabled and unable to walk and take care of my most basic needs, no one seems to care. I thought that PCP's would get protection, due to the unanimous passage of HR 756 (S. 660) The Pain Relief Act of 2010. Now I read that Washington State is requiring patients to go to pain specialists if they have chronic pain that is not cancer. Do you all have such a short memory? The DEA said "Let doctors be doctors," but apparently the FBI didn't get the message, as they systematically destroyed the careers of 5000 pain specialists in 4 years. So explain to me: Where are these pain specialists people in Washington State supposed to turn to? And what is the difference between, say, bone cancer, and endstage Osteoarthritis, which I have in both legs? NONE. The pain is routinely compared and said to be the same. Is that the protections you afforded us through The Pain Relief Act? Are we all in again for "mythical treatment?" Perhaps I should play in our 10 Superfund sites not yet cleansed. I've been working with chronic pain patients like myself for over 5 years, and have recently begun working online....well, I can't call it work, because I can not produce quickly enough. I've had friends die because pain can make you desperate. I'm quickly losing my patience. I fear that someone will kill themselves. What I don't understand is your complete lack of understanding. Ever have a toothache? Well, imagine that in the major areas of your body. And it never stops, and there's nothing OTC, and the ER doctors say "All I hear is pain, pain, pain," without examining a patient....If what is done to chronic pain patients were done to dogs, doctors would have to pay fines, and actually do time. So, as I was a contributor to the betterment of society, a taxpayer, and now disabled, I must suffer constant pain because...why? What is wrong with the last plan to train PCPs? Does someone have to be attacked with a baseball bat to the knee so that you understand? Not only is that pathetic, and I truly hope no one has to experience this, but what is wrong with you people? Senator Kerry, Did Uncle Ted have much pain? I worked on your campaign via Ray Flynn, and I worked on Ted Kennedy's bid in 1980. Thanks so much for taking the time to read this.

Do all chronic pain patients a favor. Write up something beforehand. I know where I crossed the line, but tonight, I'm in a lot of pain. I'm fine. I can call my Rep or Kerry's office: I didn't intend, nor did I, threaten anyone. I'm just tired of this wheel of misfortune we must run.

US PAIN FOUNDATION IS PART OF BIRDIES FOR CHARITY PROGRAM

2011-03-20T11:46:00.000-04:00

Hey, folks

This is awesome news for U. S. PAIN FOUNDATION, and FOR ALL OF US PAIN PATIENTS, CAREGIVERS AND OTHERS WHO UNDERSTAND OUR STRUGGLE FOR DECENT MEDICAL CARE, AND OTHER ISSUES.

PLEASE READ IT CAREFULLY. IT IS VERY SIMPLE-- FOR ONE PENNY, YOU CAN MAKE A WORLD OF DIFFERENCE!

Happy Saturday everyone,

I wanted to pass this on to all of you. US Pain was lucky enough to be asked to be one of a few selected non profits to be a part of the BIRDIES FOR CHARITY PROGRAM.
This is a unique opportunity for US Pain to raise much needed awareness as well as raise some money for our programs.

Pledges start at one penny, YES - 1 cent. I am not asking any of you to make a pledge, all I am asking is if you can forward the link below to family, friends, doctors, companies and others, asking them to fill out the form and pledge at least a penny per Birdie.

I would suggest writing a nice personal note along with the link as to why we need their help and pledges.

We also have paper forms if some do not want to use the link, they can mail it in.

The wonderful and exciting thing about this program is:

1) The Non Profit with the most pledges, not the most money raised just the most number of pledges wins $5000 and even more exciting

2) We get to have an Advocacy Tent at a Major Golf Outing where over 300,000 people will be in attendance over 3 days and we will get national media attention.

The link below takes people to our personal pledge page, where they fill out all the info, and the rest is taken care of. Just copy and paste and send to as many as you can.
https://events.r2it.com/BIRDIES/DefaultPage/TravelersChampionship/Default.aspx?site=TravelersChampionship&siteId=32&charity=USPainFoundation&charityId=28056
If anyone needs actual paper copies to give out, we will mail you as many as you like to hand out.

Thank you for your help and dedication to making US Pain a household name.
--
Founder/PresidentUS Pain Foundation inc.P.O. Box 2182Shelton, CT 06484P:1- 800 - 910-2462F: 1 - 800 929-4062E: uspainfoundation@gmail.comwww.uspainfoundation.orgwww.invisibleproject.org

I AM SURE THAT PENNY PUPPETLEGS CAN SPARE SOMETHING!!!

Direct Message to the Chronic Pain Community from the Director

2011-02-21T20:12:00.000-05:00

News and Updates

To my fellow pain survivors, friends and collaborators,

First and foremost, thank you for being my inspiration. I am truly in awe of your ability to rise above pain. I look to you for added strength and courage. I know that together we are creating awareness and finding answers; our voices are finally being heard. Keep remembering that we all matter, and each of us can make a difference.

As you know, people with pain created US Pain Foundation for other people with pain. To make sure the needs of those dealing with pain are met, US Pain is focused on expanding programs and broadening connections within the pain community. It is our belief that by uniting we become stronger and more empowered. We can accomplish anything. We can bring about change. We can believe in better days.

Our commitment is to put the needs of you, the pain community, first. To better serve you, we would appreciate your help. I invite each of you to browse the list below and contact us if you are willing to help. Remember, we all can do something.

Thank you,

Paul Gileno

President/Founder

US Pain Foundation

How to Help the Pain Community

Join our mailing list to receive free pain resources. By sending a current mailing address, we will send the INvisibleProject magazine and informative pain resource guides. In addition, as US Pain collaborates with PainPathways Magazine, every quarter you will receive the latest edition of this inspiring periodical. To become a part of the US Pain family, just clickhere and sign up.
Learn how to become a US Pain Ambassador or Volunteer by clickinghere.
Share your story with US Pain, and help change laws in your state. If interested, click here.
Become "Empowered." Find all the resources you need to help inspire, inform and support you on your pain journey by clicking here.
Join US Pain on or to stay current and informed.
Learn more about the INvisible Project.
Become involved. Give your time to a local organization, join a local support group or simply reach out to others with pain.
Visit US Pain Foundation's website to connect with other organizations dedicated to helping the pain community.

Share your Story

Do you live with chronic pain or know someone that does?

Would you like to be a part of helping others with chronic pain?

Do you believe your voice can create change in the chronic pain community?

Would you like to share your story?

Created by people with pain for people with pain, US Pain Foundation is committed to making a difference in the lives of those suffering. We recognize the power in each of us. We all have a story to share, and that is why we need your help. Pleaseclick here to learn how your life story can create change, make a difference and inspire others.

Thank you.

MEET THE DIRECTOR OF U.S.PAIN FOUNDATION

2011-02-21T04:44:00.001-05:00

I'd like everyone to meet Paul Gileno, Director of the newly established U.S. Pain Foundation. This is what a testimony looks like. Remember, the U.S. Pain Foundation Is the only group run by and for pain patients. Right now, New England states are in trouble.

May 17, 2010
Electronic Data Systems
PDL Coordinator
195 Scott Swamp Road
Farmington, CT 06032-3124

Dear Committee Members:

My name is Paul Gileno. I was diagnosed with RSD and failed back syndrome in 2004, I founded US Pain Foundation inc. in 2007, I sit on the advisory board for Pain Pathways magazine, I am also the director of Invisible Project.
I am 37 years old now, and I’m speaking to you today on behalf of the more than 25,000 US Pain foundations inc. members as well as an advocate for the millions of people with chronic pain throughout America.

US Pain foundation is dedicated to building, supporting, empowering and educating groups of people with all forms of pain disorders. US Pain Foundation inc is a 501(c)(3) non-profit organization.
Our members – 2000 of whom are Connecticut residents – are concerned about two issues, the cost of medical care and what they describe as restricted access to medications. Although it might seem at first that the two concerns are mutually exclusive, in the case of people with various pain disorders, and especially in the case of those taking biologics, they are remarkably complimentary.
I would like to explain how restricted access dramatically and negatively impacts our members, and how eliminating this barrier to care would not affect the economic health of providers. I also want to clarify that when I say pain,that includes Fibromyalgia, MS and many other disorders.
In the past ten years pain has been transformed from a debilitating disease to a controllable chronic one.
The result, made possible by better therapeutic treatments, has increased productivity in the workplace, and created better family and personal lives. Continuing this positive trend is dependent on patients being able to receive the proper drugs in the proper doses, and receiving them in a timely manner. No one understands this more acutely than patients and their physicians. You can understand how our members can interpret lack of access, as being arbitrary, uncaring and needlessly intrusive in the doctor-patient relationship. We understand and support efforts to cut costs in today's economic climate, but we think it is important to note that the proper medicine and cost savings must co-exist within our patient base.

I think each of our organizations sees the world similarly. We both see people in pain, and we allocate our unique assets to help alleviate their pain, being as compassionate and as efficient as possible. These two objectives - compassion and efficiency - do not necessarily occupy opposite ends of the treatment spectrum. The negative effect on patients, therefore, is outsized compared with the miniscule economic efficiencies realized when it comes to biologic treatment. In addition, the biologic per capita expense, while higher than for some medications, is mitigated, we think, by the proven efficacy of the biologic treatment protocol. This is the protocol that has dramatically reduced long-term care costs, providing savings that can only be measured exponentially. When access is denied or modified, patients risk incurring irreversible damage and mobility loss that will negate these savings. Do we want to live in a society where lowering costs will directly affect a person’s health and ability to have quality of life.

It does seem logical that restricting access among pain sufferers would return substantial economic benefits to an already-strained system. But in reality and our experience this is not necessarily the case. Sometimes, the risk of prescribing older, less expensive drugs risks incurring GI and other adverse events which can be much more expensive to treat than the cost of the newer drug that may have avoided the event. These costs are measured in hospital stays, lost productivity, frustration, depression, ability to work less and additional drugs needed. In addition, some patients can control their pain with over-the-counter drugs, eliminating the question of access altogether. But others cannot. We believe the prescribing decision must reside with the physician. At a minimum, an override option when patient needs warrant it, needs to be available, without administrative burdens that coerce a physician into alternative and less effective prescribing habits.
We know access is a difficult issue. Our focus is as a patient advocacy organization and we believe there are many actions that can be taken to rein in costs, including judicious prescribing habits. We also know that Medicaid patients can have poorer outcomes, and poorer compliance. For us, this is a signal to redouble our advocacy and education efforts, bring in more support groups and try to reduce the amount of medication changes and other disruptions that can prevent positive outcomes.
For this reason, we respectfully ask the P&T Committee to give the outsized consideration Medicaid patients deserve when making its decisions. We would request that the Committee consider every patient’s need to open access, to an unfettered relationship with their physician, to the opportunity to receive the best medical care and the best prescription drugs available, and to the opportunity to control a chronic disease such as arthritis in a way that contributes to their ability to work and live productively.
As always, we are ready to engage in constructive conversations and welcome the prospect of working with the Committee to reach a patient-centered equitable healthcare system.

Sincerely,

Paul Gileno
US Pain Foundation inc.
P.O. Box 2182
Shelton, CT 06484
P:1- 800 - 910-2462
F: 1 - 800 929-4062
E: uspainfoundation@gmail.com
www.uspainfoundation.org
www.invisibleproject.org

NEXT I WILL POST THE MISSION STATEMENT, AND WHAT IS CURRENTLY GOING ON IN NEW ENGLAND THAT WILL EFFECT ALL PAIN PATIENTS IN A DETRIMENTAL WAY. FEEL FREE TO GO TO FACEBOOK OR TWITTER FOR MORE INFO, AS WELL AS THE WEBSITES. I WILL ADD THE ABOVE MENTIONED DOCUMENTS AT THE BOTTOM OF THIS PAGE.

Hearings in New Hampshire Set for Thursday, February 10, 2011

2011-02-07T14:38:00.000-05:00

There is a Bill being introduced in the State of New Hampshire, and Testimony is on Thursday, Feb. 10. At this short notice, the best we all can do is email and/or call the people listed in tis email from Paul Gileno, Director of United States Pain Foundation:

To my dear fellow Pain survivors,

The pain access bill is on the docket in New Hampshire for Thursday, Feb. 10th at 2pm. In summary, this bill requires health benefit plans providing prescription drug benefits to provide coverage for a medically necessary drug prescribed for the treatment of pain without requiring the covered person to first use an alternative drug except an appropriate generic brand.

Here are the details:

SB 171, relative to prescription drug benefits for the treatment of pain.

http://www.gencourt.state.nh.us/legislation/2011/SB0171.html

Health and Human Services Committee: Room 102 at 2pm

Committee Members: Sen. Bradley (C), Sen. De Blois (VC), Sen. Kelly, Sen. Lambert, Sen. Sanborn

1.) It would be fantastic if we could mobilize the NH pain survivors that are interested in testifying at the hearing.

2.) US Pain is issuing an action alert to NH survivors. We need you to contact the members of the Health and Human Services Committee and urge them to support SB 171 Contact information for the committee members is attached - as many phone calls, letters, and emails would be great! We want the legislators to hear your story.

For more information or help please contact us atuspainfoundation@gmail.com or call 1 - 800 910 2462

Thank you

Paul

I will post the three sentences we want added to the Bill. If you are a pain patient, from New Hampshire or anywhere else in the country, please take the time to email and/or call the members of the HHS Committee.

Watch "House" But Remember It's Fiction

2011-01-17T04:16:00.000-05:00

   I had heard that one woman in the Chronic Pain Community diagnosed herself by watching House. I think that's great, because she was right. There is a part of the plot that is very, very dangerous for the young, and not so knowledgeable: House's addiction.
   My first pain specialist was really great. He taught me a lot about myself, my body, conditions, and medications. House seems to eat a lot of Vicodin. HERE'S THE DANGER:
   First, no doctor in his right mind would abuse Vicodin as depicted in the show. He would chose Loritabs over Vicodin, and even that's bad. Loritab has twice the opiate in it than Vicodin, although it is the same drug.
   Secondly, any doctor in his right mind would not: even take that much Loritab. Why?
BOTH DRUGS CONTAIN 500 MGS. OF ACETAMINOPHEN, commonly referred to as Tylenol in the States, Paracemetol in Canada, and any other British colonies.

Some people that are depressed and suicidal take these drugs in high quantity because they think the opiates would kill them.
The sad fact is the overdose of acetaminophen is what kills them. And it's a very painful death.
So our Dr. House is literally poisoning his liver, not with the opiates.
Fiction, or good fiction, is supposed to allow you to the point where there is a "suspension of disbelief." That is, every thing you see should at least ring true. That is why I can't watch it anymore.

So, for example, when Wilson or Cutty chide house for his medication abuse--in spite of them knowing he is in pain--no one EVER brings this fact up. They go out and DRINK ALCOHOL with him. You are NOT supposed to drink while taking any Tylenol. They finally had to write it on the bottle. READ IT.

I enjoyed the show, and once in a while I'll watch it. But it really gets under my skin. Dr. House (the character) would have long ago died of some kind of liver disease before he would hallucinate!

I learned the hard way. My first pain specialist warned me, and told me I should go on daily medication. At the time, I was taking as little Percoset and Codeine after a car accident, and I wasn't on any other daily medications. It took me a year, and something very scary.

I donated blood, and it was rejected! Liver enzymes were too high. I immediately called my pain specialist, and said you win. My primary care didn't like that, but he didn't like me anyway. My pain specialist increased my life span by at least 10 years.

Now, if I could just find a new decent pain specialist, so I can get my knees!

So go ahead, enjoy House. But don't emulate him!

A Fragment From Penny's Diary

2011-01-02T01:36:00.000-05:00

The following was a draft of a partial e-mail Penny was sending to a friend. While it is incomplete, I think her sense of desperation can be heard.
She did not discuss the other health conditions that slowed her progress to surgery for knee replacements. I'm looking through her notes to see if she wrote about "the condition her condition was in.

Dear XXX,

Forgive me if I already told you, but I am on Cymbalta, and it helps with neuropathic pain in my legs and sometimes in the band around my abdomen. I know this is all complicated, but I had taken Supartz injections, and next day went to ED w/ 660 glucose. Since the doctors didn't know about the Supartz and the rare side effects of difficulty breathing and a fast heart rate, they concluded I had walking pneumonia, although now they can not say for certain. So now I have Type I Diabetes for 2 years, a pain specialist that dropped me for this, in part because he was wrong.
My doctors are killing me. It's a vicious cycle. They increase my insulin, so I have to eat more (become hypo and hyper every day, which is exhausting), and since I can not walk, I'm gaining weight, not burning glucose the natural way, i.e. exercising, which I've done my entire life. I'm waiting for surgery that won't happen until I lose weight, and it's a never-ending cycle. Now, my feet are deformed, and my fibulas are so bowed that I'm afraid they'll snap. I saw a doctor with the reputation of being an idiot, and he said, oh that will never happen. Really? I know someone who had a greenstick fracture of her fibula--that's when the bone snaps and pops right out of your skin. Never-never land is more like it, with a Peter Pan doctor. Each in their own way, primarily by doing nothing, are killing me.

I told my endocrinologist; these things are what he taught me. I didn't say it in a cruel way, but he thinks I have a "fixation" on pain. So, LAST WEEK, HE DUMPED ME. I even used a circular chart, but they didn't even look at it. There is an irony: CTD is British for "circuling the drain, i.e. dying.

I can say this to my PCP: some days I scream at him, but I can't afford to alienate him. Meanwhile, 5 requests--faxes from me, my PCP, and snail mail eluded my surgeon's records dept, and I'm sitting here waiting for Bay State to call with an appointment. My PCP said he would follow their recommendations, but I want him to put it on paper, because he's mercuria

That's where it ends. Not the story, not Penny, but this fragment of an email. I have to put this up in pieces as I understand them, and then put them in order..

Chatting at New Hampshire Pain Talk on Wednesday Night

2011-01-01T02:23:00.001-05:00

It's comforting to talk to friends, online or not, who are struggling with pain. It's a comfort in a selfish way, because only they can fully understand what you are going through. So I enjoy swapping stories and situations with Facebook friends, and the patients I've met over the years.
On Wednesday, I checked out the chat at New Hampshire Pain Talk. (Link on sidebar.) I don't know why, but it was even more comforting. Possibly, I'm responding to the expectation and realization that every one there is dealing with pain in one form or another, as a patient, moderator, or therapist. I don't need to declare that "I'm a chronic pain patient and advocate," as I do on Facebook. I've found I can be talking to someone for quite some time on the social networks, and never know until someone brings up the issue, which is usually me (that's the advocacy part.)
While conversing with people at NH Pain Talk, though, it's so much easier: No small talk necessary, just spit it out. I'm going back next week. Anyone reading this should check it out.
http://nhpaintalk.com/

PLEASE WAIT UNTIL JANUARY 7 FOR DOWNLOADING TAZTI

2010-12-29T01:55:00.000-05:00

I RECEIVED A VERY KIND LETTER FROM THE DEVELOPER OF THIS SPEECH-TO-TEXT PROGRAM. I WAS CONCERNED BECAUSE i LEARNED THAT THERE IS A COST INVOLVED , BUT ONLY IF YOU'RE INTERESTED IN GAMING AND A FEW OTHER ADDITIONS TO THE BASIC PROGRAM
ALSO, HE EXPLAINED HOW THEY ARE TAKING THE TIME OVER THE HOLIDAYS TO PERFECT THE PROGRAM SO PLEASE WAIT UNTIL JANUARY 7 TO DOWNLOAD IT i WILL PROVIDE THE LINKS FOR THE DOWNLOAD AT THAT TIME.
I'M USING IT RIGHT NOW AND IT'S NOT TOO SHABBY! I'M REALLY ENJOYING IT. i SEE THIS PROGRAM AS A FORMIDABLE TOOL fOR THE DISABLED, WHETHER IT'S CARPAL TUNNEL SYNDROME, OR OSTEOARTHRITIS AS IS THE CASE WITH ME AND MANY OTHERS.

Pain Pals and the Disabled: Tazti Speech Recognition Beta Two Version

2010-12-25T17:27:00.001-05:00

I've had this freebie for a couple of years now. This was supposed to be the most important tool that I had to get up and running. So I got distracted blogging, reading, meeting really great and talented people, many of them also with pain issues.

With a good headset, you can train Tazti. It takes very little time, and in the intervening years of first downloading this, they've really beefed it up! Before you spend money, give this a try. It will open, login to Facebook for you. It also has the same dictation feature as Dragon. So before you spend the money, check this out. OR, WAIT ABOUT A WEEK. I'm going to set this up as quickly as possible, AND I WILL POST THE RESULTS.

The above videos will tell you what you need to know: from what speech recognition is, to what it can do for you. It's getting more difficult to sit at my desk for 18 hours, as I am wont to do, so once I have this set up, I can get a hugh, fluffy chair to sit in for a while.

Will report ASAP.

A Piece of Me

2010-12-24T02:02:00.000-05:00

I haven't been able to talk about what's been happening to me, so when I discuss a little bit with someone on line, I'm going to start piecing this together.

I know I'm whining.I have OA, I need knee replacements, my fibulas are completely bowed, and my feet have become deformed. I was seeing a pain specialist for my neck and back--caused by an injury, then told I have spinal arthritis. My pain specialist dumped me, because he wouldn't refer me to an orthopedist, and when my PCP did, the pain specialist was upset he was wrong, and dumped me. (that situation is a whole different story.) So now my PCP has me on less than a third of my medication for two years now. Other complications, severe Vitamin D deficiency and a bunch of other stuff.

I will clarify little by little. the bottom line right now is I am bed-ridden. When I complete the circle of hell that I'm in health-wise, I'm sure some people won't believe me.

PTSD Vets Need the same Protection under ADA

2010-12-05T05:26:00.032-05:00

PTSD disabled vets should be protected under the Federal Americans with Disability Act.

When I heard about 4 years ago that our troops was routinely being denied treatment for PTSD, and then systematically discharged dishonorable, I cried. I'm not kidding. The military establishment didn't want to spend the money necessary for treating these Vets. Trumped up charges, accusations, and outright lies were used to "get rid of them."

We have seen the results once they come home. Some become suicidal, others homicidal. Everyone suffers.

It's clear that these Vets need the protection afforded to all disabled people. The ADA certainly isn't perfect, but at least it would help those who were denied something they deserved.

Please follow the enclosed link to Facebook and Vote for the Petition.

http://www.causes.com/causes/488457-ptsd-disabled-vets-should-be-protected-under-the-federal-americans-with-disability-act

Meditation, Chanting, Breathing, Guided Imagery, Mindfulness & Yoga

2010-11-14T01:44:00.000-05:00

I know I've been away longer than I anticipated. I had hoped by now that I'd have more of the videos on the second and third pages (see underlined titles under Penny's chair.)
In addition, YouTube, while it is undergoing all the changes, is not as reliable, and some of the rules have changed. I can no longer gather videos in my queue and be assured my booty is still listed the next day. So I have lost some work here and there.
Rather than have you wait, I'd like you to take advantage of these videos. There are many more than what I've collected, but I think I have a range representative of what's available. So for now, I'm posting the links to the playlists I have on one of my channels on YouTube. These first two lists are on the same channel:

http://www.youtube.com/user/scribadiva?feature=mhum#p/c/5F12ABD61177AC0D/1/iG_lNuNUVd4

I'd like to point out a gem or two in this list (again, on the same channel. Just hit playlist at the top of the box, then scroll down to 'Meditation Videos'. The second down is a half-hour of chanting; there are a few other videos of chanting, but not as long. I use this when I'm tense while I'm working on another tab, like right now. In this list, there are also Yoga positions. The easiest and most effective, I think, for some people, are the Guided Imagery videos. Like certain soaps and candles claim to offer, these videos will take you away. (Creative Visualization involves the same process, except you are in the driver's seat, and guide yourself. Start out with one of the videos, and you'll see what I mean.)

The second playlist has lectures on Mindfulness and Guided Imagery. The link for the second playlist (you can scan the playlists and find it yourself,) is entitled, 'Meditation, Yoga, Chants, and includes more directed medications as well as one of two lectures on Guided Imagery, and using Chakras and 'The Third Eye:

http://www.youtube.com/user/scribadiva?feature=mhum#p/c/C9D0406010A50D8F/0/3gHS6FslaTk

You will notice that some of the videos use Christian imagery, and others do not. This really isn't about religion to most people. These methods have been used to assist in healing, and easing your nerves, which will, left unchecked, increase your experience of pain.

Other methods which might assist you in coping with pain may be the use of your rosary to pray, or pray without one. You may like to light candles at church or at home, in front of a picture of your favorite saint. I don't think it's necessary for me to go into every religion and make recommendations; you would be the best judge of what works for you.

As always, if you have a question, or need someone to talk to, I am here as often as possible. On my other blog, NIANG (see Dashboard) I'm testing Google Phone. In the near future, I will be testing it here. So far, I have had some luck with it, but I would like to wait some time before I post it here and can say it's absolutely reliable.

IN THE MEANTIME, IF YOU FEEL YOU ARE FED UP, OR ARE IN CRISS, PLEASE USE THE PHONE NUMBERS PROVIDED FURTHER DOWN THE BLOG. CALL WHOMEVER YOU NEED TO IN ORDER TO RELIEVE YOUR SUFFERING. PEOPLE ARE OUT THERE WHO CARE AND WHO HAVE BEEN THROUGH SOME SORT OF PAIN, AND WILL DO EVERYTHING THEY CAN TO HELP. I ONCE WORKED IN THAT CAPACITY, SO I SAY THAT WITH CERTAINTY.

If you have reservations about employing any of these methods, look at the manual from the American Pain Foundation, under the section "Complementary and Alternative Medicine." In conjunction with surgery, physical therapy, medication and other strategies, you can control your pain.

I can not stress this enough: This is not a 12-step group. I know there are people that believe that. From my own experience and that of other people I knew well, I feel this is counter-productive.

You are NOT powerless to control your pain. If you don't control your pain, your pain will control you.

N.B. You may see the following statement on YouTube channel: "You are unable to view the playlist because it is marked private." IGNORE IT. JUST CLICK ON 'PLAYLISTS' IF NECESSARY.

BlogUpp! | the blog: Auto-Share on Social Web

2010-09-16T03:38:00.003-04:00

BlogUpp! | the blog: Auto-Share on Social Web

From a Post on NIANG(Needle in a New Groove)

2010-09-14T18:45:00.000-04:00

This is a copy of a post on my blog, Needle In a New Groove.com. The subject matter was light-weight enough there, but it really belonged here. BloggUpp is watching my other blog, so it will reach more minds, I hope.

For the past few months, I've been working on another blog, thepaingame.org. Now I'm doing some advocacy work for the American Pain Foundation. September is Pain Awareness Month. If you have pain, or you are a caretaker of someone in pain, or know someone from your past, please get involved. The link to the American Pain Society is in the links. (Please be patient; I have saved over 50 pain-related links, but I need to sort them out and retest them.)

I started writing this on another blog, and realized I've been reluctant to talk about what I've been through, and I'm still going through. This portion has more to do with why I need to do these things related to pain.

Something I didn't expect to happen did.

I 've known a lot of pain patients. Without going into details, I was in touch with 4 of my fellow patients. Heavy guilt trip, like you have the skills, you have to get out there for us, and for everyone else like us. They are all dead now. But I started getting these strange reminders.

With enough medication, I can walk, sort of. People see me struggling, and offer to help. That was surprising, but not as strange as this. If I was walking down the street, or in the store, a single person--all genders, all races, all ages--they approach me, and tell me the horror story that they managed to live through.

This doctor, he had me go through 7 operations on my legs? They were all unnecessary, and I grew up not being able to walk.
You know the pain clinic here? They nearly killed me. That I heard so often, I refer to it as the painful clinic.
I broke my back, and they did nothing. Six weeks of medication, I was out of work for 2 years.Possibly the worst: 10 years, chronic pain, Invisible, until I found the right doctor. During those 10 years, my wife left me, my family dumped me, saying I was crazy. Now I have a good doctor, but everything else is gone.

The stories aren't strange. Believe me, I know well over 300 people that are pain patients, or what's left of them. It's the manner in which they told me. They popped out of nowhere, tell me what happened, and just as I was about to empathize, say I'm sorry, or even ask a question, they'd turn around and walk away. Like I had a sign on my back, saying "tell me your pain."

That's why my blog thepaingame.org is so important. I originally wrote a post about "Fixed News" and the boycott, but it disappeared and I don't know why. So I'm writing this first, then....This is the most important thing I can do. Along with my other favorite causes, LIKE STAND UP TO POVERTY and MILLENNIUM DEVELOPMENT GOALS FOR 2015. Change the world one post at at a time.

IF YOU WANT TO VOTE ON THIS, AS IT APPEARS IN NIANG, THE LINK IS

http://www.blogupp.com/directory/blog/www.needleinanewgroove.com#comments

Virtual March on Washington, D.C. Sign up for that and other things at the American Pain Foundation

2010-09-03T08:09:00.001-04:00

This is exactly what the page looks like. Just click on the page, and the link will bring you to the right place.
Posting is still a mess, but I want to give you an idea of what the page looks like, and what you are signing up for. You may want to think about what your plan is. If you need the name of any one in Congress, the Federal Government, or contacts in your area, don't hesitate to mail me through the blog, or on Facebook, under Linda Martin. DON'T LET ANY LACK OF INFORMATION ON CONTACTS TOP YOU FROM WHAT YOU WOULD LIKE TO DO. IF I DON'T HAVE IT, I'LL FIND IT, OR THE RIGHT PERSON THAT WOULD KNOW, WITH THE EXCEPTION OF SPECIFIC MEDICAL ADVICE. You can find that on the American Pain Foundation's Web Site. They have lists of doctors, as I have mentioned before. There are also groups and organizations dedicated and specializing in your specific issues. You CAN have more than 1; I think I have 11, and you can select the groups, and it is saved and printed out in a booklet for you! How's them apples? I'm in Massachusetts, but I can help you no matter where you are.

Virtual March on Washington 2010 Registration

Register for the Virtual March on Washington and STAND UP for the rights of people with pain to timely, appropriate pain care! The march will be going on all month. Come back and visit the march regularly for new material and ways to take action. Sign up to stay in the loop and find out what is happening this September in the movement to improve pain management!

Please tell us:

Name:

First Required	Last Required

Email:Required

Street 1:

Street 2:

City/State/ZIP:

City	State Required	ZIPRequired

If you respond and have not already registered, you will receive periodic updates and communications from The American Pain Foundation.

Remember me. What's this?

Question - Not Required -Use this space to share a comment about why you are "marching" on Washington in support of better pain care. Please be as concise as possible, we did not want to limit the space allowed, but also would like to be able to share your comments easily. You may check the box below if you would like to keep your comments within the American Pain Foundation.

Question - Not Required -Please do not share my comments outside of the American Pain Foundation.Yes

*Note: We have not required your street address, BUT if you would like to be able to send alerts in the future to your state or Congressional representative that information is needed to route your message to the appropriate person.

Question - Required -To reduce spam and increase security, please type the text you see in the box provided.

Change image

Last Updated: 08/10/10

2010-08-20T21:55:00.001-04:00

If doctors treated dogs the way they treat us, they would have to pay a fine and/or go to jail. Because I had walking pneumonia that gave me Type I Diabetes, my pain specialist dropped me (I was placed in a coma, not in a coma, and he assumed I had taken all my meds) So for 18 months, I'm on a 1/3 of my dose, and I'm picking out wheelchairs/scooters. Which complicates my glucose, endocrinologist raises my insulin dose, I have to eat more, can't exercise without pain meds, eat more, more glucose, more insulin, more weight, no exercise....I'm sick of educating these idiots. he thinks Ï have a "fixation on pain." So I'm working on a chart to tell him what he's told me, only he doesn't understand what he's doing.

Medications Rob Nutrients: From Huffington Post http://www.huffingtonpost.com/hyla-cass-md/is-your-medication-robbin_b_679382.html?igoogle=1

2010-08-18T00:02:00.001-04:00

This is a page quoted from the Huffington Post. For more info, see the link on the bottom to reach the author, Hyla Cass, M.D, at cassmd.com. The link to this page with additional info and comments: #mce_temp_url# #mce_temp_url#

For every dollar we spend on prescription drugs, we spend a dollar to fix a complication. Understanding how nutritional supplements affect these drugs could make them safer and more effective."

-- Mehmet Oz, M.D., Professor of Surgery at Columbia University  and author of bestsellers "YOU: The Owner's Manual" and "YOU: On A Diet"

A little known but potentially life-saving fact is that common medications deplete vital nutrients essential to your health. Here's a practical guide to avoid drug-induced nutrient depletion, and even replace your medications with natural supplements.

We have been called a pill-popping society, and statistics bear this out. Nearly 50 percent of American adults take at least one prescription drug, and 20 percent take three or more. In a survey(1), more than half of those over 65 and 30 percent of people 45 to 65 used at least three prescription drugs in a one-month period. With our increasing reliance on medications comes nutrient depletion, a problem we can't ignore. Every medication, including over-the-counter drugs, will drain the body of specific nutrients. On top of this, most Americans are already suffering from nutrient depletion. In fact, many of the conditions we see in everyday practice may actually be related to this deficiency.

The good news is that with the right supplements, you can avoid depletion side effects, and even better, you may be able to control and prevent chronic diseases, such as diabetes, cardiovascular disease and osteoporosis.

A Common Scenario

I have seen case after case of patients who have experienced nutrient loss from taking prescribed medications. Too often, neither the patients nor their doctors were aware that the cause of symptoms was the medications themselves.

For example, a 57-year-old retired schoolteacher, Kathy, was being treated by her internist with three medications: the thiazide diuretic, Diuril, for high blood pressure; Fosamax for osteoporosis; and the beta-blocker, Tenormin, for heart palpitations.

She was referred to me, an integrative psychiatrist, because she suffered from fatigue, anxiety, depression and insomnia. I couldn't find an obvious psychological explanation for these symptoms, except perhaps for the stress of her physical illnesses.

The likeliest cause of her symptoms was the drugs themselves. So, rather than adding an antidepressant, an anti-anxiety pill or sleeping agent, I checked the known nutrient depletions associated with these medications. Lab results confirmed that Kathy was deficient in three essential minerals: magnesium, potassium and zinc.

Any one of her three medications could deplete potassium and magnesium, causing arrhythmias, hypertension, fatigue and depression. The diuretic also could be depleting zinc. Her internist agreed that he would continue to oversee her medications while I supervised her nutritional regimen.

Daily doses of magnesium, zinc and potassium, in addition to a high-potency multivitamin, resolved Kathy's "psychiatric" symptoms. Once her mineral levels were restored, her energy and mood were back to normal. She was not only spared the burden of an additional medication, but was able to lower the doses of the three she was taking.

I see cases similar to Kathy's more frequently than I'd like. Physicians will often tell these patients that their symptoms are "part of the illness" or "just signs that they're getting older." They then prescribe an additional drug or two for the side effects, further compounding the problem.

To understand the role of medications in nutrient depletion, we must first understand the variety of nutrient-depleting mechanisms in pharmacy.

Many drugs, such as the stimulants Ritalin (methylphenidate) and Adderall, are prescribed for attention deficit disorder. These can reduce appetite. This, in turn, decreases the intake of beneficial nutrients. Some antidepressants also tend to have this appetite-reducing effect.

On the flip side, a drug can reduce nutritional status by increasing the desire for unhealthy foods, such as refined carbohydrates. Many of the neuroleptics (antipsychotic drugs) and some antidepressants cause insulin resistance or metabolic syndrome, with resulting blood sugar swings. Patients then crave simple carbohydrates, such as sugar, bread and pasta. Steroid drugs, including those given by an inhaler, can create similar issues as well.

Certain medications reduce the absorption of nutrients. In passing through the gastrointestinal tract, drugs often bind to specific nutrients before they're absorbed into the bloodstream. The antibiotic, tetracycline, for example, can block absorption by binding with minerals such as calcium, magnesium, iron and zinc in the GI tract.

Weight loss drugs and cholesterol lowering medicines similarly bind to fats, preventing them from being absorbed. Drugs that treat acid reflux or heartburn raise the pH environment of the upper GI tract, which reduces absorption of needed vitamins and minerals. This is especially problematic among the elderly, who often are already low in stomach acid.

Nutrients are essential to the metabolic activities of every cell in the body. They're used up in the process and need to be replaced by new nutrients in food or supplements. Some drugs deplete nutrients by speeding up this metabolic rate. These drugs include antibiotics (including penicillin and gentamicin) and steroids, such as prednisone and the gout medication, colchicine.

Other drugs block the nutrients' effects or production at the cellular level. In addition to the intended effect on enzymes or receptors, medications can influence enzymes or receptors that help process essential nutrients. For example, widely prescribed statin drugs block the activity of HMG-CoA, an enzyme that's required to manufacture cholesterol in the body. This action also depletes the body of coenzyme Q10, which requires HMG-CoA for its production. This has a serious negative impact on muscle and heart health.

Drugs also can increase the loss of nutrients through the urinary system. Any drug that does this can drain the body's levels of water-soluble nutrients, including B vitamins and minerals, such as magnesium and potassium. The major offenders are medications to treat hypertension, particularly the diuretics that reduce blood pressure by increasing the volume of water flushed out of the body.

Drug-induced nutrient depletion is far more common than we think. In evaluating patients' symptoms, doctors must assess whether symptoms are due to the illness, to side effects of the drugs or to drug-induced nutrient depletion. Considering the inadequate nutrition of most people, we must remember that the illness itself may be due, in part, to nutrient deficiency. To cover all bases, it is easiest to provide baseline coverage: a daily high potency multivitamin mineral formula, CoQ10 (200 mg), omega-3 fatty acids (2 grams) and additional vitamin D and probiotics, especially if you've taken antibiotics.

The bottom line: As physicians, we must look more deeply and determine underlying causes to determine whether drugs are harming patients, and what we can do to reverse these effects. As a consumer, be aware of these drug-nutrient depletions, and do what you can to avoid taking medications whenever you can, using natural products instead.

1. Centers for Disease Control and Statistics. Health United States 2006. Accessed via www.cdc.gov/nchs/data/hus/hus06.pdf#093.

I will also continue this theme in subsequent blogs, discussing various categories of medications, their nutrient depletions, and natural, healthier substitutes.

A more complete article can be found at Total Health Magazine, p. 40 ff.

For more information, see my book, Supplement Your Prescription: What Your Doctor Doesn't Know About Nutrition available at my website, www.cassmd.com.

Hyla Cass, M.D.

Hyla Cass M.D. is a board-certified psychiatrist and nationally recognized expert on integrative medicine

Posted: August 17, 2010 07:00 AM

Link to WebMD Pain Center

2010-08-13T12:12:00.001-04:00

WebMD's center for chronic pain is much more extensive than it was three years ago. I'm having problems posting anything, although if I share something using Blogger from another site, posting works. I want to see if this works. And the WebMD site is really important. From checking your symptoms, to introducing you to methods of controlling pain, as well as finding doctors, it's become a spring of vital information to any pain patient. Use this link to get to the starting gate. Later, I will list all the methods I've used.

http://www.webmd.com/pain-management/guide/pain-management-overview-facts

If you haven't signed up with the American Pain Foundation, you should as quickly as possible. You will be sent a manual that describes all forms of treatment and their effectiveness. The APF link is on the left; I will be adding a page consisting solely of links. "Los Links!" as the Bing commercial says, are very important, especially by bloggers and webmasters.

New Hampshire Pain Talk: Saturdays at 7:30

2010-07-30T18:43:00.000-04:00

Here is an email I received from NH PainTalk. Please read the article. It lists some critical information, in keeping with my post on Practical Suggestions.

Weekly Chat

Please join us Wednesday and Saturday Evenings at 7:30pm EST for community chat. It's fun, informative and a place where we can relate to other's living daily with chronic pain.

A special Friday evening chat tonight 7/30 at 8:00PM EST
with PB70.

NHPainTalk.com

Topic of the Week

Hands down our topic of the week was by member SWLawries: "L4/L5 fusion." We wish him success. The intimacy forum has also taken on new interest. Join us in the conversation. Thank you all.

Welcome to
our new chat leaders

April2002 * Athlete

Giovonna * JSTurner

Momreen * Ponygirl

and THANK YOU as well!!
mykidsmother
pb70

July '10 website stats

17,222 page views
9,052 unique page views
1,917 visits
746 unique visitors

NEW VISITORS included two from India (Nagpur and Lucknow) and two from England (London and Woking). We were visited by people from 18 different states this month, including from all of the New England states, New York, Pennsylvania, Delaware, New Jersey, California, Virginia, Georgia, Colorado, Tennessee, Ohio, Michigan, and North Carolina.

NEW MEMBERS: We added 16 new members in July! Please join me in making them feel welcome in our community. ~ Lance

CassLD * Morita7
KittenTherapy * Cathykg
Joanne18 * Xdwaynex
jens mom * kayward
SandraWbstr * rainmkr123
maryprice * gwake
jean1221 * nicegirl
Nightowl * yardman

READING ROOM: Popular articles in the Reading Room this month included, “When Pain Becomes Chronic,” an excellent summary of modern pain treatment techniques and treatments, and “Glucosamine Provides Little Benefit for Chronic Low Back Pain,” which covered a glucosamine study appearing in the prestigious Journal of the American Medical Association.

From Penelope Puppet Legs

The Fifth Vital Sign is a law in some states. It means that when you go to the hospital, you must be asked what level of pain you are experiencing.

To see if your state mandates the "fifth vital sign" do a google search.

August 2010

In this edition

Finding a good pain management team
Topic of the week
Welcome New Chat Leaders

Finding a good pain management team.
submitted by mykidsmother

Living with chronic pain on a day to day basis seems like a battle to most of us. Some of us have been through diseases such as cancer or been involved in an accident that has resulted in chronic pain. More are afflicted with fibromyalsia, a severely painful syndrome which for years was labeled a catch all diagnosis when doctors couldn't find a "real" problem.

Whatever the case, we are faced with the fact that we need help managing our daily lives. Most of us are in denial at first, angry at our bodies for letting us down. Just when our self worth is at its lowest, we turn to the people who we grew up to believe would be there to help us: Our physicians.

Government outcries claiming that prescription drug diversion is of epidemic proportions has placed fear, and rightly so, in most physicians who write prescriptions to patients. The problem lies when doctors blindly label patients as drug seekers and tell us to close the door when we leave.

The following helped me in my journey to find and keep a good pain management team. Always research pain management facilities and find out what their treatment philosophies are.

1. Ask for and keep a copy of all your medical records in case you have to find a new physician in a hurry.

2. Be brutally honest with your pain management provider. Tell him/her what does or does not work. Tell him/her what you are or are not willing to do, and why. If they do not listen, find another provider and officially tell your current provider you are no longer a patient under his/her care.
3. If presented with options, ask for time to research them if you are not comfortable with that treatment. If you have tried the treatment before tell him/her why it did not work, or what reaction you had to it..You have a right to say no. Just as a doctor has a right not to treat you.

4. Be sure to keep all scheduled appointments. Failure to do so only wastes time for the doctor, it takes time away from another deserving patient. It also looks bad on your part as a patient.

5. Interview pharmacists and tell them why you are on medications and which ones they are. Ask if they are willing to stock them on an ongoing basis if that is your treatment plan. Then you have no reason to shop different pharmacies. Most pain management facilities will insist that you choose one pharmacy and stick to it.

And last but not least.......

Place your medication in a safe place, shred your receipts and destroy all labels placed on all of your bottles before placing them in the trash. They not only contain the name of the medication, but also your name and address.

Pain is now known as the fifth vital sign.
Do not let it go unnoticed.

American Pain Foundation Webimar: Is It Fibro? August 12th

2010-07-30T17:22:00.001-04:00

There are important links here. Even if you aren't interested in Fibromyalgia, but you have pain, save the links and use the appropriate one for you or a friend. Unfortunately, the links didn't copy, so you would have to copy and paste them.

American Pain Foundation. Dedicated to the elimination of the undertreatment of pain.

Home | Learn | Connect | Take Action
http://action.painfoundation.org/site/R?i=mSXrkbJrgGENv5dVC34ABg..
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Donate Now
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WEBINAR
Forward to a Friend
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"Maybe It's Fibro?"
The Fibro Experience: Perspectives from Peers and Nursing
Thursday, August 12th - 8 pm Eastern time
Please join us on Thursday, August 12th at 8 pm Eastern time for a one-hour, live webinar, "Maybe It's Fibro?"
featuring guest speakers who will provide information on fibromyalgia and discuss the chronic widespread pain condition from the perspective of nurses and people living with fibro. We will explore:

* self-management and coping strategies,
* the concept of the nurse as an ally,
* how a nurse's training and role can advance patient care
and management,
* tips on what people living with fibro can do to aid in their
pain management plan, and
* hurdles, successes and much more. Continued... Important Instructions and Links for Webimar and other links for Veterans, etc.

Speakers:

Kim Dupree Jones, RN, PhD, FNP is an associate professor in the
Schools of Nursing and Medicine at Oregon Health & Science
University (OHSU) in Portland. She earned her bachelor's degree
in nursing from the University of Tennessee, her master's and
nurse practitioner endorsement from Emory University, Atlanta, and her
doctorate in exercise physiology from OHSU. Kim has also completed a
post-doctoral degree in neuroendocrine physiology. She is an
international speaker for patients, clinicians and researchers
investigating fibromyalgia and maintains a clinical practice at OHSU
in which she evaluates and treats people with fibromyalgia. Kim
currently is the president of the Fibromyalgia Information Foundation
(www.myalgia.com), a non-profit organization whose aim is to
disseminate scientifically sound fibromyalgia data.
http://action.painfoundation.org/site/R?i=ZmUDRCzmw57uQUpoZhvh8Q..

Ashley Mahoney has been a volunteer advocate with the American Pain
Foundation's (APF) Action Network since its inception in 2006.
Ashley was diagnosed as a college student with fibromyalgia and reflex
sympathetic dystrophy in 2003. As a Georgia state leader for the
Action Network, she works within the community as an activist for
people living with pain. Ashley received her bachelor's degree
in communications from Reinhardt College, Waleska, Ga., and works in
the insurance industry. She is a mother to a little boy and loves
being a mom.

Mark Maginn, MSW, ACSW, volunteers as a California state leader for
the APF Action Network. As a pain advocate, he provides information to
the public and works on policy issues that arise in state and national
government. Mark knows pain intimately as he has lived with
fibromyalgia and other pain conditions including osteoarthritis,
Bechet's disease and microscopic colitis for more than 30 years. He
previously worked as a psychotherapist and adjunct professor of
psychology, focusing on post-traumatic stress disorder. Mark's
pain prevents him from continuing to work as a psychotherapist and
teacher, so he now writes poetry and is working on a memoir of his
experience with pain. He has recently accepted an appointment to
APF's Pain Community Advisory Council (PCAC) which serves to
advise the APF Board of Directors, CEO and staff to insure that the
programs, actions and positions are guided by and grounded in the
experiences of people who live with pain.

Carolyn Noel is APF's project specialist working on fibromyalgia
projects, the Military/Veterans Initiative and APF's website.
She is an APF Action Network state leader in Georgia and is a member
of the steering committee of the Georgia Pain Initiative. Carolyn was
diagnosed with fibromyalgia and other pain conditions including
degenerative disc disease, six herniated discs, a traumatic brain
injury, peripheral neuropathy, basilar artery migraines, sciatica and
more following a 2002 car accident. She spent nearly five years in a
wheelchair and is now walking again and shares her story of the many
challenges and successes as a means of inspiration to others living
with pain. Carolyn served for six years in the Marine Corps and
advocates for her fellow veterans, military personnel and civilian
pain patients alike, participating in numerous speaking engagements
and media opportunities.

Space is limited so please register today. Please note that
registration is a two-step process.

* Visit the registration page to being the process. Complete the
registration questions and click the "Register"
button.
http://action.painfoundation.org/site/R?i=QpHkqQleinbxFktHPIMPyw..

* Check your email for a message from ops@infiniteconferencing.com
to confirm your registration. Be sure to check your junk or spam
folders if you don't receive the email.

* After clicking the link in the confirmation email, you will
receive a second email with links to access the webinar and a
phone number to call at the scheduled day and time. Please
make sure to run the system test before the webinar.

If you need assistance with registering, please contact us at
webinar@painfoundation.org.

Thank you,
American Pain Foundation

This Webinar and email were developed in collaboration with
Pfizer.

To Connect and Support our Efforts:

* Keep up with us on Facebook and
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Twitter.
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* Visit the APF Action Network site to learn what advocates are
doing to build the movement for better pain management and get
involved!
http://action.painfoundation.org/site/R?i=lsu8n0pQJ39ULGUYxQk5uw..

* Visit the Exit Wounds site to learn more about our Military
and Veterans living with pain.
http://action.painfoundation.org/site/R?i=O9S_SlzvN8vFC5qfsSapww..

* Join PainAid, our online support community.
http://action.painfoundation.org/site/R?i=xBL1tA6xTfEpQC3jZl2xvw..

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From Penelope Puppet Legs' Diary: My Story An Introduction

2010-07-29T20:50:00.002-04:00

For the past twenty years or so, the rise and demise of pain specialists and pain clinics has been fraught with GAMES. I intend to reveal some of the attitudes, beliefs, and actions of the medical establishment.
For the uninitiated, those who are suffering with pain most of the time can hardly think straight. I wish pain was not a fact of life, but the reality is the majority of us will experience pain at one time or another.
In general, women understand pain for obvious reasons. So, too, are the attitudes that women have to deal with are quite obvious. A century ago, women were treated for hysteria by doctors by inducing an orgasm.
Things are changing. A recent example is the Framingham Heart Study that until recently, was solely the study of men. In the last 10 or 15 years, women were finally studied. Lo and behold! Women have different symptoms when having a heart attack then men do!
On the other hand, seeing a male doctor about pain is usually more in keeping with the misogynistic tradition in medicine.
I intend to tell as much of this story as possible. I've had the bad luck of a gym accident, a car accident 6 years later, and after healing and off medication for over a year, got mugged and had my head slammed repeatedly on the sidewalk.
And all the exercise lifting weights, aerobics, tennis, biking destroyed my knees. So I'm now in the marked for a scooter and a wheel chair. And because I worked out most of my life, I've lost all the cartiledge around my knees, which causes pain throughout both legs. I asked doctors about it for four years. Most refused to refer me to an orthopedist, thinking that I was a Drama Queen. Finally, after spending nights screaming, my Primary Care Doctor (I should have asked him first) had an MRI done. I need both knees replaced. My hips are going, and more often than not, I have flank pain, which is the worst. Every time you breathe, you can feel it.
I need to tell this stories for me and for others, a number of which are already dead (See post on link between chronic, severe pain and increased mortality.
Maybe someone will learn something from this. Others will see their story here, so I won't be using true identities. It will be a lot of fun making up names for some of these heartless, idiotic doctors. If they did to a dog what they have done to many patients, they would have to pay a fine, and possibly go to jail.

Usually, The Pain Game is the Waiting Game

2010-07-29T20:44:00.000-04:00

The Waiting Place
Posted on February 4, 2009 by 7aki Fadi (empty talk; keep link: written by Dr. Seuss
You can get so confused
that you’ll start in to race
down long wiggled roads at a break-necking pace
and going on for miles across weirdish wild space,
headed, I fear, toward a most useless place.
The waiting place…
… for people just waiting.
Waiting for a train to go
or a bus to come, or a plane to go
or the mail to come, or the rain to go
or the phone to ring, or the snow to snow
or waiting around for a Yes or No
or waiting around for their hair to grow.
Everyone is just waiting.
Waiting for the fish to bite
or waiting for wind to fly a kite
or waiting around for Friday night
or waiting, perhaps, for their Uncle Jake
or a pot to boil, or a Better Break
or a string of pearls, or a pair of pants
or a wig with curls, or Another Chance.
Everyone is just waiting.
Oh, the Places You’ll Go!
_______________________________
The Pain Game can keep you waiting for years to find the Mensch of a Doctor, a doctor that actually cares about suffering. There is a story often told about Dr. Sabin, the man who isolated the polio virus. He was stricken with severe, unrelenting pain. Sometimes it is said that exploratory surgery found nothing, but not everyone says there was any surgery. It wouldn't surprise me, because when A DOCTOR IS IN PAIN, HE IS TAKEN SERIOUSLY.
Yes, I mean "he," because I'm not sure a female physician would be treated that way. After 10 days of this excruciating state, the pain disappeared as mysteriously and rapidly as it had come. Dr. Sabin took it upon himself to apologize to his patients.

MOST IMPORTANTLY: WE ARE NOT MEDICAL DOCTORS

2010-07-29T13:02:00.000-04:00

I AM NOT A DOCTOR, NOR A MEDICAL PROFESSIONAL OF ANY KIND. NEITHER IS PENELOPE PUPPET LEGS. But there are places I can direct you, organizations that will put you in contact with doctors and others that do know what they are doing.

Empowering the Disabled: Six Suggestions

2010-07-28T22:11:00.002-04:00

I originally wrote this for a Bloggers Unite Event. The full post is here for now, but I will be directing it more fully towards the Chronic Pain Community, along with links more appropriate for people in pain. But for now, these are the basics:

Before I say anything, let's take a look at the face of disability now. Meet Jerry Gibson:

http://www.ktvb.com/news/Carpenter-makes-hand-made-furniture-without-crucial-tool----his-eyesight-98828419.html if you would like to read more about Jerry. I think we would all agree that Mr. Gibson has had a successful life. And I know if I searched, I'd find examples just like him. This includes Bloggers like Andrew (his link on the side.) I believe all disabled people have this potential; we just have to make more lifestyle changes than most to do it. (If you don't have much time, just look at the highlights and "Los Links."

Here's a list of things a disabled person--or an advocate/caretaker--can do. This is very true for the recently disabled. I have a number of diseases/ conditions, but the majority of them are pain-related.
Whether or not you are in pain, I think these suggestions will be helpful, as well as the links below.
The essential problem is most people are so sick they don't have the strength to act on their own behalf. That's why:
1. Advocate for yourself, or find someone who will, such as a caretaker, advocate, family, or a concerned friend. Below you will find links to find a social worker, if it's necessary; also, a therapist, which I think is essential to maintain your mental health in the midst of this insane health care system.
You are probably eligible for many more services than you think. Find these services in your state that are available to you. In Massachusetts, the Secretary of State publishes a "Guide to Services in Massachusetts." I know a lot of states may not have that. If not, your first step is contacting local social services, or finding a social worker. Consider whether the Visiting Nurses Association may be of help to you. They've helped me, and they will again once I move. They have a medical social worker that will come to your house as a resource for housing and all kinds of benefits.
Also, avail yourself of the medical associations dedicated to your particular infirmity. The American Pain Foundation is a great resource for all disabilities, not only painful ones. It helps if you are online.http://www.mydigitallife.info/google-medical-search-engine/ is a link for exactly what it says. You avoid reaching a lot of junk.
If you know someone that is not online (thus not reading this,) have them call your local library. You'd be surprised how helpful your local librarian can be. Ask her/him to do a search starting at the American Pain Foundation (link below.) They have lists of just about every association connected to disabilities, some associated with pain and others not.
At APF, one can make a list of all relevant associations, save them, and print them out into a little booklet. It will contain phone numbers, and you can call and talk about finding a doctor in your area. Also, ask them to do a general search for your condition, along with your zip code.
Do not limit yourself to state services. Many of the government programs are available only through the feds. For example, if you are denied Social Security the first, even second time, don't give up. That's what your Senators and Representatives are for. Call and talk to one of their aides. If you've applied for Social Security and was denied, consider a lawyer. It is not unusual for any bureaucrat working in any agency to say NO the first time.
And don't forget your Senators and Representatives on the Federal level. If you don't know who to call, you can find them online, or drop me a note: I've got the Capitol Records' list for all of them
.
2. Educate yourself about your condition. This is critical; you have to find out about your condition, because you have to judge whether your doctor is helping or hurting you. Some doctors, you may have to educate. So many doctors, no matter how sick or how much pain you are in, just want you to go away. You have to decide whether to dump them and find someone else, or have your doctor take you seriously. Educating yourself, bringing printed material to your doctor, can make a huge difference. I find that doctors respond to lists of symptoms, as well as charts, or new studies that explain your conditions in you doctor's language. Since M.D.'s, as in Modern Deities, have ego and the arrogance of Wall Street Bankers, and law professors combined, do this gently. .

3. Other social resources that shouldn't be neglected: local churches will help you even if you are not a part of their congregation. Some people still believe in good works. Now, when I suggest any kind of faith-based or charity services, I am not saying to depend on them before or instead of the government. Just don't limit your options. If you are critically ill, and don't have any help, you will find that many churches maintain a bed or two: I don't believe you have to be a member of that congregation, but everyone is different. For ex. I was seeing doctors/physical therapists 4 times a week ( I still am!) There was a group of people from different churches that took me to the doctor, and helped me shop, as well. It's definitely worth checking out.

4. Sometimes, possibly most of the time, you will be told "NO." People will be rude, and do not care about you in any shape or form. In addition, sometimes you have to call the same agency 3 times to get the right answer. Bureaucrats are like anyone else; therefore, do not yell and make things difficult for them, because then, no matter how wrong they are or how much they screwed you up, they will do NOTHING if you lose it. Speak to them with respect, even a little obsequious, and they will go out of their way to help.
An example of rudeness: I was going to a pain clinic, where I received injections that actually caused more damage. One day, while I was headed to the elevator, I saw two people in it. I obviously was in distress and using my walker. Just as I was about to enter the elevator, the doors closed. Neither person on the elevator even pretended to try to hold the door. I looked back at my former husband, current caretaker, and he just shrugged his shoulders.
The point is: Do not be thin-skinned. You have needs probably more than anyone else. Don't be surprised when people don't understand.
The American Pain Foundation. Joining is free. You will receive a comprehensive book on many different forms of therapy, all of which I've done. The chapter on Complementary/ Alternative Methods is very helpful. They will send you monthly emails, and they've reinstated the paper newsletter in snail mail.
Go to: www.painfoundation..org
AlsoWebMd to find a doctor http://doctor.webmd.com/physician_finder/ and WebMd itself for your edification.

5. Most importantly: DO NOT CHECK OUT. Do not lose hope, or faith, whatever your condition may be. Once disabled, I know how difficult it is to make lifestyle changes. It took me 3 years to come to terms with it. Not being able to work really killed my mojo for a while. But then, I sold some photographs I had taken 20 years earlier. And my life fell back into place. Then, I got much sicker, and so I blog. And I have met some of the most amazing people. Honestly, when I was able-bodied, I met a lot of very famous people. None of them compare to whom I've met online.
If you feel impulsive, like "I've had enough and I can't take it anymore, call or talk to someone. They may not understand, and you may not get the reaction you expect. Think of Jerry and the new face of disability. LISTEN TO "FOR US THE DISABLED, ON THE LEFT SIDE.

Below is a list of links for resources if you feel you might harm yourself. I took this directly from the APF 'If you are in crisis' page: Before you even think of a plan, look at the links at the bottom of this post.
I can tell you from personal experience that suicide is not an answer. What helps me is making a list of for what I am grateful. We all take some things, like a roof over our heads, or food to eat, for granted. Maybe you'd like to think about it, and join Bloggers Unite for "Gratitude Day.

You can visit my blog at or here, on www. needleinanewgroove.com. Leave me a message. Sometimes, I'm too ill to even check my mail, but as soon as I see it, I will respond ASAP.

6. Finally: If you don't control your disability, it will control you. Making adjustments is not losing control. I've seen 12-step groups for pain patients: VERY BAD IDEA. Never think of yourself as powerless, whether you are in pain or not. You can make choices, and you can help others.

Breathe and Listen to the Guided Imagery

2010-07-11T23:15:00.000-04:00

The Long Term Consequences of Chronic Pain

2010-07-01T19:13:00.003-04:00

For more information, follow the link to the American Pain Foundation. If you are in pain, you will find remarkable resources there. I recommend joining--it's free--and not only will you get their newsletter, but upon joining, you will be sent a booklet. It reviews all manners of treatment, not limited to medication, as some critics suggest. I am very impressed by the Complementary and Alternative Medicine (CAM) listed there. I've literally done them all.
Keeping yourself mentally balanced and in control is crucial. Look at info related to meditation, mindfulness, creative visualization, biofeedback and prayer.
I know there are people that are pushing a 12-step approach to pain. That is a HUGE mistake. If you declare yourself powerless over the pain, the game is over for you. You MUST maintain and use every tool available to control your pain. If you let it control you, you will only get upset, and it WILL heighten your sense of pain. I'm not talking about losing it occasionally; we all break down and cry at one point or another. But never adopt an idea that you are out of control. You are not. There are people who understand. Go to the APF site (link below) and find someone to talk to.

Pain-Topics.org News/Research UPDATES

UPDATES in this blog are a component of the website Pain Treatment Topics (http://Pain-Topics.org). The mission of this website is to serve as a noncommercial resource for healthcare professionals & their patients, providing open access to clinical news, information, research, and education for a better understanding of evidence-based pain-management practices. YOUR COMMENTS ARE WELCOMED.

Thursday, April 8, 2010

Severe Chronic Pain is a Killer – Study Finds

Previous research has demonstrated a clearly negative influence of chronic pain on health. Now, a new study portrays a profound link between severe chronic pain and death; inflicting nearly a 70% greater mortality risk than even cardiovascular disease.

In 1996 a large cohort of 6,940 persons was recruited by researchers at the University of Aberdeen, UK, and information collected about chronic pain status, general health, and sociodemographic details [Torrance, et al. 2010]. Followup 10 years later linked these data with routinely collected national data for death registration. A total of 5,858 (84%) individuals from the original cohort were linked, including 1,557 (27%) who had died. The researchers found a significant association between chronic pain and all-cause mortality. Particularly troublesome was severe chronic pain — survival among persons with this condition was significantly worse than among those reporting mild or no chronic pain. Even after adjusting for various confounding sociodemographic factors and effects of long-term illness, patients with severe chronic pain had a 49% greater risk of death compared with all-cause mortality and a 68% greater risk of death compared with all cardiovascular-disease-related deaths.

COMMENT: The negative impact of severe chronic pain on survival discovered by this research is dramatic and concerning; especially when considering the recent brouhaha about purportedly high risks associated with analgesic agents, particularly opioids. In an objective risk-benefit analysis, it would appear from this study that the increased mortality risks associated with untreated or inadequately treated chronic pain could pose a greater threat than any hazards potentially associated with pain-relieving medication therapies. In brief — and this is admittedly a strong way of putting it — any restrictions on access to effective therapies for severe chronic pain might be tantamount to fostering premature death in the afflicted patients. *As always, reader comments are welcomed.*

REFERENCE: Torrance N, Elliott AM, Lee AJ, Smith BH. Severe chronic pain is associated with increased 10 year mortality. A cohort record linkage study. Eur J Pain. 2010(Apr);14(4):380-386 [abstract here].

Posted by SB. Leavitt, MA, PhD at 5:27 PM

Under Construction

2010-05-21T17:55:00.002-04:00

Under Construction. Lots to say, though, as a chonic pain patient. The best site I've found--most informative and most fun--is chronicgirl. Good posts, webimars, etc. This will not be like that one; this will be about what I've learned from over 200 other patients in similar positions.

Are you in pain or is it about the dope? Discriminating Reader from another blog asks....

2010-05-08T12:08:00.001-04:00

Some thoughts on the difference between addiction and dependence....Part I
From an original post on www.needleinanewgroove.com

You may not know where I am going with this, but this will pan out well, and give you a deeper understanding of the issues. In the future, I will find the time to name the specific studies with authors. It is a travesty, but it's true: During a most desperate time in our lives, we have to keep our minds as clear as possible, not only to control pain, but to be ready with the correct statistics, as well as distinguishing yourself as a legitimate patient in need of help. There are MD's, PA's, and NP's that do understand, but the majority want you to keep moving on--unless you have cancer. Apparently many people (I know a few) feel that pain isn't legitimate unless it's from cancer, so you have to be ready for them. I will post Patient Bill of Rights, and other 'Rules of Engagement' when visiting a doctor, esp. for the first time.

I'm a chronic pain patient and need medication. Most people know I'm awaiting surgery for knee replacements, and other issues have to be resolved, (DDD, DJD, spinal, you know the list is long, and it's getting to be a drag to not only talk about this, but also dealing with doctors and their nonsense, even duplicitous ways. I just can't trust ANY of them anymore. So the question posited to me is this: This started out as a demonstration of what pain patients go through. I've started another blog, "The Pain Game" to deal with that. Someone found what he thought was a contradiction. I'm in pain, but I have these stories about two of the most notorious addicts in American History.
So to the question: Yes, my father was a good friend with Billie Holiday. My father owned what was probably the only hotel in that area (where Rockefeller Center is now) where as talented musicians like Louie Armstrong (whom I met ) and Billie Holiday could stay, because of their race, outside of Harlem. My Dad's place was just a few blocks away from the jazz clubs there, and much more convenient. My Dad helped her as much as he could, but my father was not addicted to anything. When she came to town, they would have drinking contests, and "Big John" always ended up under the table. Pictures of that are still hung in New York, and just looking at it is evidence enough. So, will I fry for this? Guilt by association once removed? Billie Holiday was dead two weeks before I was born. How do you like me now?
The second notorious junkie was Jim Carroll, writer of the Basketball Diaries. My brother just happened to be on that team at Rice High, and yes, I remember Jim very well. (I remember Bobby even better; see post on Carroll and sidebar.) In any case, my brother didn't use, was never a junkie, and is now still a minister and a missionary. (His wife sends me pictures of the family and they are always at weddings. Took a while for me to realize that my brother was officiating, presiding over the marriages.)
So, in spite of my family being involved with addicts, and I know more addicts that died from AIDS & ARC that at a count of 10 I stopped counting. And it wasn't only addicts: Most were gay or straight men or women that got it from addicts that were in New York during the 1970's
. . Do I really need to explain to doctors that endstage OA is considered by both the APF and APS to be as painful as bone cancer?
I do not have a fixation on pain. This is easily measurable by MRI. I've got bone on bone in both knees, with pitting and chips. So no, it's pain, not dope, not, but dependence.
I've gone through a series of injections, something I promised I would never so. (They only help about 23% of the population.) They neglected to tell me they would cause more pain, and when I discussed this will them, they weren't surprised. "Oh yeah, that usually happens." How about telling the patient???? I have pain now that I didn't have before. When it comes to pain patients getting addicted to their medication, the highest legitimate number--and the truth is, it's much lower than this: 14% But don't be surprised when they pull a number out of their...air and say 90%. THERE IS NO SINGLE STUDY DONE WITH STATISTICAL SIGNIFICANCE THAT CAN JUSTIFY ANYTHING HIGHER THAN 14%, and even that is really high. The prescription drug problem that is deemed 'epidemic' has more to do with people who are not in pain, This past week, one doctor said he'd take care of me if I got a letter saying I wouldn't go to that clinic anymore. Instead, he threw me UNDER THE BUS. I left a clinic based on what he asked, and I just burnt that bridge. SO uncool. He spoke to a nurse, one I told him will lie to him. He chooses to believe her, in spite of knowing me for years now.
My surgeon said not to cut the clinic, because I need a doctor that will take me for life, as there is a 1 in 3 chance of being in excruciating pain for life. I found a doctor to do that, and I just blew it. So this is going to take a week of writing, and that won't fix it.
...I'm not ready to check out just yet. So it is pain, not junk,. And if anyone tells me one more time that nobody died from pain? Is depression an illness or not??? And Depression is the tip of the iceberg.

Frida Kahlo: A Painter in Pain all her Life

2010-05-05T02:29:00.002-04:00

This is a full quote from the link above. I think Frida Kahlo is an apt role model for any of us, but especially for people in pain. She managed to live through her art. Read the comment below. Again, I DID NOT WRITE THE CENTER PIECE. To go to the site where this appears, just hover over the links.

Frida Kahlo Turning Pain into Art

Self-Portrait with Thorn Necklace and Hummingbird - 1940¹

When people look at her paintings, they often see pain. The Mexican artist Frida Kahlo suffered for much of her life. Of her 200 paintings, many reflect her pain.¹Frida was striking, with long black hair. Her thick "bird wing" eyebrows arched over magnetic black eyes.² She was a curious child, interested in science, nature, and photography.
When Frida was six, she was stricken with polio. The disease made her right leg weak. Kids often teased her.³ Still, Frida was full of mischief. At school, she often led students in playing pranks on teachers. When a famous painter came to paint a mural, Frida played a prank on him, too. That painter, Diego Rivera, married Frida some years later.
When she was 18, a bus accident left her with a broken foot, leg, spinal column, collarbone, ribs and pelvis. For a month, Frida lay flat on her back, her body in a plaster cast. When she was a bit stronger but still confined to bed, Frida became bored. She began to paint. Painting helped release her pent-up emotions.⁴
Frida became one of the world's most talked about artists of the 20th century. Despite her fame, Frida painted mainly for herself. "I paint because I need to," she said, "and I paint whatever passes through my head." In her self-portraits, Frida is surrounded by things that are important to her—a monkey, a cat, plants. Her paintings reflect the physical hurt she endured every day. In them, viewers also see the emotional hurt she suffered in her relationships and a stormy marriage.
Suffering is not Frida's only subject. Her paintings also highlight the unspoiled aspects of Mexican folk art. Frida even dressed in traditional Mexican clothing—long colorful dresses and exotic jewelry. She wore her hair in braids. She was also concerned about social issues. She captured on canvas the unfair treatment given to her country's poor.
Throughout her life, Frida underwent 30 operations. When the first exhibit of her work was planned in 1953, doctors told her she was not well enough to go. Frida insisted. She was driven to the gallery in an ambulance. Friends carried her in on a stretcher. From a bed, surrounded by her paintings, Frida talked, laughed, sang, and joked with her friends and admirers. Though her body was broken and weak, Frida Kahlo's spirit still soared.

¹ Image public domain, taken from Wikipedia.org
² www.mcmichael.com

Frida Kahlo
I found this on a site describing the lives of women as role models. A few years ago, a movie was made about her life. Her paintings are stunning representations of jungles in Mexico. She was the life long lover of Diego Rivera. And, she lived in pain her entire life.

I encourage you to look at her Wikipedia bio. She is, in part, an icon of this blog. For that reason, I provided the paint tool, but expression does not need to be limited. A host of various mind-body modalities are out there, because pain WILL affect you psychologically. This does not mean that the pain is 'in your head.' On the contrary, pain can do awful things to your mind, and if your mind does not control the pain, the pain fully controls you---and it will be difficult for you to get help and heal as quickly as possible.

Next post, I will list some links, as well as some power-lifting for the mind. If you have any questions, leave them in comments, or send an email. I AM NOT A DOCTOR, NOR A MEDICAL PROFESSIONAL OF ANY KIND. But there are places I can direct you, organizations that will put you in contact with doctors and others that do know what they are doing.

On the Names of Medical Professionals who Don't Live Up to their Oaths

2010-05-04T22:14:00.000-04:00

We all know that the first statement in the Hippocratic Oath is "First, Do No Harm." There are too many doctors and others that don't recognize that by not addressing "The Fifth Vital Sign," Pain Level, they are in fact inflicting harm. Doctors give injections that they are fully aware will cause more, not less pain.

Others claim that "Pain never killed anyone." If that's true, that means Depression is not a legitimate illness. Twenty years ago, many doctors would say the Depression came first, and the pain is a symptom of Depression, and while that is sometimes the case, it's an illegitimate argument. These days, most agree that pain causes the Depression, which can be, and is, life-threatening.

Now we can discuss this from the lofty confines of the Ivory Tower, but the reality is many people commit suicide not only because of the pain, but by the way they are treated by the medical establishment. I've lost too many friends that way, and I am enraged when someone makes these assertions that are out of touch with real lives of people and the impact pain has on the patient and their friends and families.

I am not interested in destroying any medical professional careers, and I've already mentioned using pseudonyms for patients. I will do the same in cases where the doctor is relatively unknown. The exception will be discussions about well-known and responsible pain specialists, like Russell Portnoy (New York) and Joel Hochman (Houston.) I've been told the former is the most famous and best pain specialist in the world, the latter, a man who I respect and have seen in the past, holds the same honors as the former.

In terms of a doctor who has done something egregious, or you would like to post a comment about someone and can substantiate your claim, I'll convert your comment to a post.

I have no intention of this blog being a hit squad. Very good pain specialists can make bad judgement calls. However, doctors that routinely insinuate that you are a junkie, a whore, or refuses to treat you because "you are just too ill" is fair game. Who wants to waste their time talking to them? But we'll find a way of doing this in a responsible, yet informative way. Or at least I can tell my story, and let the newly hurt/diagnosed get a clue about The Pain Game and find your way back to health, I pray.