Friday, April 11, 2014

Chanting the Pain Away



The mantra Om Mani Padme Hum (literally: "Aum, to the Jewel in the Lotus, hum) is recited by Tibetan Buddhists to invoke Chenrezi, the Bodhisattva of Compassion. Repeating this mantra accumulates merit and eases negative karma; meditating upon it is believed to purify the mind and body.

Spinning prayer wheels, physical or digital, are believed to confer the same benefit as speaking the mantra. It is often recited with the aid of a mala (string of prayer beads.)

namo amitabha!

This was written by nilavanni on YouTube. If you want to go directly to the video, use the YouTube logo under the video. Or use this link: https://www.youtube.com/user/batesaurio

This blog is not about religion.  One of the purposes of this blog is to find tools that might help you when you are in great pain. Chanting was very helpful during my last visit to the hospital. The chanting and music has a natural calming effect on the brain. A focal point can be used, such as a stone or a lit candle, with very good results.




Thursday, August 1, 2013

IF YOU HAVE A LOVED ONE IN ASSISTED LIVING FACILITY


or are considering one for yourself, a program aired this week that is a MUST SEE. The award-winning investigative and documentary series on PBS, Frontline, aired a program that will break your heart. Along with ProPublica, the program entitled "Life and Death in Assisted Living," will open your eyes and break your heart. Since there are many corporations in this growing industry, the program focused on Emeritus, an assisted living facility VENDOR, and mostly in California. Assisted living is not meant for people who are ill, or have memory issues or full-blown dementia. That is true by law. Yet the atrocities depicted are far worse than you can imagine. Staff are told that people who clearly need skilled nursing because they can not walk, wash or care for themselves can stay. Staff are not trained for dealing with deadly conditions, but they are well-trained in their policy of  close the back door. If you are sensitive and don't want to follow the link, basically it  means that once that bed is filled, no matter what the condition of the patient is, is not to leave...ever....until they are dead.
The site offers extended interviews, stories on the missing and disappeared, and a checklist for what to look for when searching a facility best for you or your loved one.I checked in my state of Massachusetts, and there are at least a dozen of Emeritus facilities. In all honesty, the prisoners at Guantanamo (better known as Gitmo) have more care than Emeritus facilities.

My search was immediately directed to one of our local PBS stations. When I tested the link, I was offered the choice of which affiliate I would prefer, so you can localize your connection to your PBS.

Braggart's Note: : The Historian of PBS, Ken Burns, went to Hampshire College when I was there. But no, I did not know him well.

Personal Note
I chose to delete any further personal notes about my own experience and that of my family. I think my braggart's note is enough fun for tonight, as lame as it is! (Wait until I brag about my friends!)

Sunday, April 15, 2012

Are You Stuck? Box of Crayons:"Beyond the Timid Middle"

If you haven't noticed, I'm a fan of Box of Crayons. I've posted their videos. Technically, I guess it's a self-help program, but you don't join, and you don't have to buy the books. I really appreciate the creativity put into their programs, both artistically and its condensed presentations.  This  one, "Beyond the Timid Middle," gives the message, TAKE A STAND.


This 2-minute, direct approach will shake you up and leave you plenty of food for thought. As pain patience, it is so easy, especially if we are under-medicated, or you have doctors that give no treatment at all, to feel beat down, as if somehow, it's your fault. That's b/c the medical establishment, who will at best, give you injections that a. Only work for 26%*, and b. Cost thousands of dollars. Finally, you are lucky if it works or does nothing. The consequences can be devastating, as in mine, which cause permanent pain where I had none, and wasn't told until the sixth injection, even though I raised the issue every meeting. Other injections were responsible for incorrect diagnosis, mistaking a side effect for walking pneumonia, which brought on Type I diabetes.


My point is that we can be beaten down so easily when we are at our weakest. Two suggestions off the top of my head.


1. Look on my other blogs or go to Box of Crayons blog, where you can find eight lessons to reassess where you are in life. lt is very concise, and if you really think it through, it can change your life.


2.  Join the ONLY ORGANIZATION FOUNDED AND RUN BY CURRENT AND FORMER PAIN PATIENTS. Gaining support at United States Pain Foundation is like a breath of fresh air. I would, in addition, suggest you get information from the American Pain Foundation, including their booklet that explains the different methods used in treating pain and HEALING. The booklet also has an extensive list of Complementary/Alternative Medicine.


TAKING A STAND is joining both organizations. You will get advice from people in the know. Right now, I'm in rehab, after having a heart attack, simply b/c my doctor wouldn't give me the pain meds I needed to work out, which I've done my entire life.


  The link on this post will bring you there on YouTube. From there, you can go on to the blog.
And look on the sidebar for links to APF and USPF. Join the group that understands you best.


Whatever you do, watch this two-minute video, and think about it. I hope you enjoy it as much as I did.




* Source: American Pain Foundation

Sunday, March 25, 2012

Soundscape Of Chillcrust Valley Rehab & Nursing Home


There's a lot to describe about Chillcrust, such as its structure, the purpose of separate units, staff and administration. The unique nature of the soundscape, I'm sure, would have something in common with other facilities, but the following is just a flavor of the "genpop" that is very much a reflection of Flink. This description of what I hear is from the need to be bed-ridden for two weeks. 
In a small child-like voice that travels far, a woman screams "help! Help Me!" night and day. It disturbs the men the most, because they don't see her getting help. Nurses say, "Ignore her. We are doing what we can." Sometimes, they are wrong, and that's how people end up in the hospital.
Another woman has a ghostly voice, literally. She could be asking for a nurse for hours, or just lets out a sound. I haven't asked her if she thinks she's a ghost.
Still another woman...at first I was convinced she was doing what I do sometimes. When in extreme pain, and vulnerable outside, not sure if I will make it to where I'm going. I talk to my pain-riddled body:"C'mon, c'mon, move it!" before I resort to more productive measures, like using mindfulness to concentrate on the outside world. When this woman walks, she did the same thing, I thought. Until I heard the second voice, also from the same woman: "I'm coming, I'm coming, leave me alone, stop hitting me. I'm moving as fast as I can!" Her physicality display is one of great pain, using a walker, hunched over, barely able to take a step. the Nurses insist she's mentally ill (the stress here has people violating HIPPA left and right,) /but just like phantom, or ghost, pain, it's still very real. ( A limb is missing but the brain doesn't know it.)
And, of course, we can not forget the siren. She starts out with uncomfortable sounds, and moaning. And like a fire truck or police car, the siren winds herself out very low, then spirals upward in decibels and notes. She may need her pillow adjusting. I tell her to keep that for real emergencies, and told her the story of the Boy Who Cried Wolf. She's bilingual, but her speaking abilities from a stroke make it hard to speak, and then she uses Creole. I found a program on Google, but we had a breakthrough. She hears every thing about me, and one day, she was doing very well in English. She was an English teacher in Haiti, but lives in Boston until her stroke. By her demeanor, she is no doubt a proper Lady.
Madame, as I call her, is my roommate. My left ear gets the full blast.  I experience the siren less than 10 feet from me. More about Madame another time. My hearing has always been sensitive, a sense that is in danger by the daily siren call. There is so much more to Madame, that I will devote a post to her.
 Later, I'll tell you about the man who has "more pain than everyone here combined."  He screams incessantly, but for pills. I've tried to help him, because he's being labeled, and he does have legitimate pain. Unfortunately, he has an abuse problem, one that is quite serious. The more he talks, and focuses only on the need for pills--he ignores anyone that speaks of any other method in a VERY distinctive way. As you speak, he turns his head left, right, up and down. Just in case you doubted his interest.
Even more interesting is Mama, 103 years young, and she never stops moving in her low-riding wheels. Oh, we have characters galore here. I wouldn't miss my time here for the world.

Saturday, January 7, 2012

Eyes - Free Project by Google Android

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.

Thursday, November 17, 2011

Chillcrust Valley: Home of Short-Term Thinkers


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.

Tuesday, November 8, 2011

Talking Points & Issues in Massachusetts

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



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.


Monday, November 7, 2011

Medicare Cuts Are Dangerous for Your Health


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

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.

Friday, November 4, 2011

Update

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.

Sunday, October 23, 2011

The Louise Hay School of Medicine

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....

Saturday, October 22, 2011

Quarantine a la Florentine

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.

Thursday, October 13, 2011

Medispeak, Medithink:COMING ATTRACTIONS



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.


Wednesday, October 5, 2011

FAIL FIRST ALERT: STATES CURRENTLY VIP

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.

Saturday, September 17, 2011

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

toplogoUS PAIN FOUNDATION inc.



 "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.

Saturday, July 30, 2011

Skip Baker: Persecuted Pain Patient and Activist


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 finding what I I have written, I'd like to clarify some details.  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. I will find the information I have to put 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. Soon, you will find out more about Skip's life. His story maybe understood only by other chronic pain patients.
The links are functional, so if you don't want to wait for me to unbury what I've written on my dysfunctional, older computer. write it up, you can look it up. I'm not sure when I will be able to add the relevant information, and this post is almost two years old. Hopefully, there has been some progress. I have about 20 posts that I need to put up. I've had both technical difficulties and a very hard time finding time to put them up. I'm also going through my own situation of harassment and retaliation for reporting the bad behavior of an institution. Honestly, its a tough call to say that what happened to Skip Baker is the product of harassment or outright torture. I don't use that word lightly. The actors in Skip Baker's story may have changed, but the plight of all chronic pain patients remains true today. I'm testing this phone as to whether I can post well enough. Please excuse any disjointed thoughts. I will edit it properly later when I can get the laptop out. The problems of speech recognition are also a factor.

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.

Friday, July 29, 2011

Language Defines Reality Too Fearful to Face

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


Monday, June 20, 2011

American Association of Pain Medicine





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.

Tuesday, June 7, 2011

Wednesday, April 13, 2011

If or When You Go Into the Hospital

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

Tuesday, March 29, 2011

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

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. 

Sunday, March 20, 2011

US PAIN FOUNDATION IS PART OF BIRDIES FOR CHARITY PROGRAM


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.
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 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!!!