dahlia in my garden: Rio Fuego in Coleus leaves

Tuesday, May 29, 2012

Tuesday-Newsday #66

It’s time for Tuesday-Newsday! The featured blog post this week is “9 Ways Mindfulness Helped Me Heal With Chronic Illness” by Peter Waite at HealingWell.com

Let Me Know: If you’d like me to watch for articles on your pain condition, just drop me a note in the comments section below.

WARNING:  My goal is to provide the most up-to-date news I can, which you can then take to your personal doctor and debate the merits of before you try it. I do not endorse any of the docs, treatments, info, and meds in anything I post nor can I guarantee they are all effective, especially not for everyone. I always include the citation, source, or website so you know where it came from. As is the case with any health info, ALWAYS get your doctor's opinion first!
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*CHRONIC PAIN NEWS






*PAIN Rx








*OSTEOARTHRITIS









*TRIGEMINAL NEURALGIA





*FEATURED BLOG POST

by Peter Waite 

Monday, May 28, 2012

Memorial Day - Honor Our Military

Tuesday-Newsday will be delayed due to the holiday. I hope to post by Tues evening. 
Update: I'm having internet connection issues, so I'll do the best I can.

~* Honor Our Military *~

Let's honor our military,
The men and women who serve,
Whose dedication to our country
Does not falter, halt or swerve.

Let's respect them for their courage;
They're ready to do what's right
To keep America safe,
So we can sleep better at night.

Let's support and defend our soldiers,
Whose hardships are brutal and cruel,
Whose discipline we can't imagine,
Who follow each order and rule.

Here's to those who choose to be warriors
And their helpers good and true;
They're fighting for American values;
They're fighting for me and you.

~by Joanna Fuchs

Saturday, May 26, 2012

From darkest shadow toward bright future

Did you see it? Last weekend there was an Annular Eclipse over part of the United States. An eclipse happens when the moon passes between the earth and the sun, causing the light from the sun to be blocked from our view. This eclipse was not a total solar one; the moon was not “large” enough to fully block out the sun (it depends on where it is in its orbit, nearer or farther from us).

I love eclipses! However, I was so tired on Sunday I didn’t want to go downstairs to look. We didn’t have anything to view it with, like welder’s glass or a pinhole camera, so my husband was poking a hole in a piece of paper and trying to project the image onto the ground. It wasn’t working.

As I sat at my computer desk, I suddenly noticed a bright line against the file cabinet beside me - what a fluke! My window blinds have small circles where the cord runs through them. I was getting the solar show projected right inside my own apartment! When I walked into each room, I could see it on the walls, floor, and even the bed.

A line of 'eclipses' projected on my file cabinet.

I’ve seen a total solar eclipse. In 1991 my grandfather, who was an astro-photographer and liked to chase comets and eclipses all over the globe, took his wife and me to Cabo San Lucas, Mexico. I’ll never forget how eerie it felt when the light began to fade, shadows began to lengthen, and the birds stopped singing. At totality, when it’s safe to look with the naked eye, you look up and see the most incredible sight. I can understand why primitive peoples would be fearful and think it was the end of their world. 

What amazes me is that modern science is able to predict eclipses. We’ve gone from being cavemen terrified by a sudden unexpected celestial event to having the knowledge and technology to be able to predict eclipses for thousands of years into the future - and have it measured down to milliseconds.

A very long line of 'eclipses' projected on a jacket
and bags hanging in our living room.

It makes me think about how far we have come with medical science as well, even in just the last ten years. It gives me real hope that research being done on chronic pain will yield even better treatments, medications, and solutions in our lifetime.

We have passed through the darkest part of the chronic pain eclipse and are moving past the shadow into the light leading to the future!

Tuesday, May 22, 2012

Tuesday-Newsday #65

It’s time for Tuesday-Newsday! The featured blog post this week is “Be a Take-Charge Patient: Interview with Martine Ehrenclou, Author & Patient Advocate” by Annie at TraumaDolls. She says this could be one of the most important pieces she’s ever posted on her site, and it might even save your life.

Let Me Know: If you’d like me to watch for articles on your pain condition, just drop me a note in the comments section below.

WARNING:  My goal is to provide the most up-to-date news I can, which you can then take to your personal doctor and debate the merits of before you try it. I do not endorse any of the docs, treatments, info, and meds in anything I post nor can I guarantee they are all effective, especially not for everyone. I always include the citation, source, or website so you know where it came from. As is the case with any health info, ALWAYS get your doctor's opinion first!
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*CHRONIC PAIN NEWS






*PAIN Rx





*PATIENT NEWS






*LUPUS









*RHEUMATOID ARTHRITIS







*FEATURED BLOG POST

by Annie at TraumaDolls

Saturday, May 19, 2012

Journey to Diagnosis: A New Signpost on the Path

It’s been a long journey to try to achieve a diagnosis. Sixteen years ago I began this quest at Stanford University Hospital with a diagnosis of Marfans Syndrome. After more thorough tests and physical examination, it was switched to Sticklers Syndrome. I was then accepted to a clinical study of connective tissue disorders at the National Institutes of Health. I visited twice for extensive testing and lab work. The second time I was seen, they decided that I did not perfectly fit the diagnostic criteria for Sticklers Syndrome - but neither did I fit clearly into any of the other connective tissue diseases. One doctor told me that I very likely have a new genetic mutation as yet not named. So I left there with an “undiagnosis” of a non-specific genetic connective tissue disorder. It was quite a let down to not have an actual name for what I was living with. I did stay connected with the Sticklers patient group which gives wonderful help and support to members.

After experiencing twelve years of new symptoms and debilitating pain, I hoped maybe at last I could get an actual diagnosis which could give a prognosis and better treatment. I’ve been with my new insurance and doctors for about three months. Although I’ve met some very nice doctors, my hope of finding one who would be eager for the challenge of deciphering my symptoms and specifically diagnosing me did not happen. I decided since my new insurance covers Stanford University, I would go back and be genetically evaluated again and see if anything new could be determined. 

Two weeks ago, my wish of seeing someone who was truly interested in figuring out my case came true. I spent an entire day being tested, measured, interviewed, and evaluated by a group of very caring people in Stanford’s Marfans Clinic. It was fantastic to have so much time dedicated to my case - not getting rushed through in fifteen minutes - and all my concerns were listened to and addressed. I want to send out a big “Thank You!” to Sunny the center coordinator, Char the nurse coordinator, and Dr. Liang the cardiologist and associate professor.

And what is my new diagnosis? I still do not fit exactly into the diagnostic criteria for any of the connective tissue disorders. However, Dr. Liang felt the best match for my current symptoms is Ehlers-Danlos III - Hypermobility Type. I agree with him. I am still doing some research on the disorder and starting to connect with people in the patient group, but it think this disorder is a much better fit. However, I have to admit that given my journey and what I know about genetics, I wouldn’t be surprised if in the future my diagnosis is once again changed, perhaps to a new disorder yet to be discovered.

For now, however, it is reassuring to have a name for my condition and a place to go for information from doctors and patients. Next week I’ll be having MRI and CT scans of my spine and then I’ll have a consult in Stanford’s Pain Clinic. Wish me luck!

Tuesday, May 15, 2012

Tuesday-Newsday #64

It’s time for Tuesday-Newsday! The featured blog post this week is “You Need a Rich Fantasy Life When You Live With Chronic Pain” by Sue Falkner Wood.

Let Me Know: If you’d like me to watch for articles on your pain condition, just drop me a note in the comments section below.

WARNING:  My goal is to provide the most up-to-date news I can, which you can then take to your personal doctor and debate the merits of before you try it. I do not endorse any of the docs, treatments, info, and meds in anything I post nor can I guarantee they are all effective, especially not for everyone. I always include the citation, source, or website so you know where it came from. As is the case with any health info, ALWAYS get your doctor's opinion first!
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*CHRONIC PAIN NEWS

This study is an investigation into the role of concerns about medication, pain anxiety and self-compassion in dependence on painkillers in people with chronic pain. Click headline to take part. 

Legislation has been introducted to help end discrimination against patients who need so-called “specialty and biologic drugs,” by requiring insurers to impose the same co-payment obligations as they already do for other medications. Read more HERE and HERE

Read opinions on APF shut down:

*I have to include these two stories about pain sufferers who were ignored and/or treated improperly - and both died from misdiagnosis of their pain. These stories make me so angry and sad. Pain, especially in women, seems to be taken less seriously. You can read another blogger opinion on this issue HERE.




*PAIN Rx





*MULTIPLE SCLEROSIS








*OSTEOPOROSIS







*FEATURED BLOG POST

by Sue Falkner Wood

Saturday, May 12, 2012

Taking some time to think

     This was an eventful week. After being seen at Stanford Hospital, I've got a new diagnosis. Now I've got to start doing some research for myself and connect with a new patient organization.
      I need some time this weekend to absorb it all and think about where I go from here. I always do that best with a little bit of gardening. Nothing soothes me more than nurturing plants.
       Here are a few photos of what's currently in my garden...

These bright orange blooms are Strawflowers.

In my birdbath: This little cactus is so covered
with blooms you can hardly see its spines.

Here's a purple Gazania.

Tuesday, May 8, 2012

Tuesday-Newsday #63

It’s time for Tuesday-Newsday! The featured writings this week are by nationally syndicated fitness, health and medicine columnist, Judy Foreman.

Let Me Know: If you’d like me to watch for articles on your pain condition, just drop me a note in the comments section below.

WARNING:  My goal is to provide the most up-to-date news I can, which you can then take to your personal doctor and debate the merits of before you try it. I do not endorse any of the docs, treatments, info, and meds in anything I post nor can I guarantee they are all effective, especially not for everyone. I always include the citation, source, or website so you know where it came from. As is the case with any health info, ALWAYS get your doctor's opinion first!
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*PATIENT NEWS






*BACK PAIN & SPINE ISSUES








*FEMALE PAIN CONDITIONS












*GOUT






*FEATURED BLOG POST

My Saturday blog post about the war against prescription painkillers was not the only one out there this week. Here are two related items from the blog of nationally syndicated fitness, health and medicine columnist, Judy Foreman:

Saturday, May 5, 2012

Should Politicians Decide Your Pain Level?

How do you feel about letting politicians decide if you should be able to take the pain medication that works for you? What if they told you your pain isn’t bad enough? Congresswoman Mary Bono Mack of California introduced federal legislation which would prevent those of us who do not have “severe pain such as late-stage cancer” to have access to OxyContin and other opioid drugs. As she puts it, “OxyContin is a powerful and dangerous narcotic drug, which has an insidious ability to turn children into addicts.”

Excuse me, but how do you accurately measure pain in a person? It’s not like taking someone's temperature or blood pressure and a number pops up.  I am not belittling those who suffer from cancer, but there are many other diseases and conditions which can cause life-altering pain. Opioid medications can greatly improve life for these people and enable them to be contributing members of society. 

I am one of those people, a chronic pain sufferer who is trying to do the best I can. I do not have cancer nor am I nearing end of life (at least, I hope not!). In the primary onset of my genetic illness it was so painful that I became depressed, stopped eating and became anorexic, and my existence was limited to being curled in the fetal position in my recliner. Being put on my medication by the National Institutes of Health Palliative Care Team gave me back a chance to have a life. Although my husband was at first upset about me being on an opioid medication, after three days of watching me and seeing how my whole demeanor changed, he said, “It’s like having my real wife back again.” You can read how I manage my pain (and it's with more than just pills) by going HERE and if you click THIS link and scroll down, you can find posts about my personal story.

How can politicians believe they possess the knowledge to make a determination on whether I am allowed to have the medication which helps me so much? How can they think it is a good thing stop my doctor from evaluating me and the two of us deciding together what is the best treatment?

Legitimate pain patients such as myself are already feeling like we are considered with suspicion and mistrust by doctors. Some of us, particularly in Florida and Washington, are already being cut off from meds we need. I know there are a lot of links here, but you really, really need to at least take a peek at these articles. You need to know what’s coming our way:



~Painkiller Access Debated as Patients Suffer


Many different drugs can kill you if used improperly. If you follow the dosage as prescribed and you do not mix them with alcohol or other legal or illegal drugs, then you will be safe. Your doctor should already have a list of what other medications and supplements you take daily, and you should know what occasional drugs are safe to take i.e. for allergies or a cough. If you are in doubt, you don’t take it until you can confirm with your doctor or a pharmacist that it is not a dangerous combination. For more advice on this read my post Protect Yourself from Your Own Medications and Medication Safety: Prevent Drug Interactions (part two). To be further responsible, keep your opioids inaccessible to others, even the members of your family. I myself use a safe; that will definitely keep your pills from becoming part of the problem in society.

There has been so much media outrage over the deaths of celebrities like Heath Ledger and Whitney Houston; I do not know the actual statistics for all drug deaths, but I would venture to say those who die from prescription drug abuse do not use their medications as prescribed or they mix them in hazardous combinations.  But even if the pills hadn’t been available to them, it wouldn’t matter. They would have used other substances, as addicts do. 

Sadly, all those teenagers that Mary Bono Mack talks about abusing pills may likely do the same as those celebrities. It’s not just opioid pain medications which can be abused; all kinds of medications from Ritalin to cough syrup are misused. Of course, there are many other easy-to-get items you can get high from (and possibly die from) like huffing spray paint, using salvia herb, sniffing rubber cement, inhaling whippets (nitrous oxide from whipped cream cans), breathing paint thinner, and lately in the news we’ve heard about kids drinking hand sanitizer - even using basic chemistry to try to extract as much alcohol as possible. 

There is no way to legislate behavior! You cannot keep people from doing stupid and dangerous things if they want to badly enough. Those who seek escapism from reality will find a way to do it, whether it’s the choking game, smoking pot, drinking alcohol, or stealing pills which are left accessible to them in the home. Where there’s money to be made, whether by getting pills illegally on the street or through the internet, we all know it’s the unavoidable truth: there are always those who are willing to take deadly risks in order to feel high or to feel nothing. 

However, we have to be careful not to throw out the baby with the bath water. There is always a good side and a bad side to everything in life - it’s all in how you use it. Look what is happening right now in Canada. On March 1, OxyContin was completely banned, in response to all the anguish over people getting addicted. Just over a month later, I found this article online: Heists, overdoses rise after Canada bans painkiller.” 

Five days later, I found another article from a Canadian paper directly speaking to my concern:  “Summit hears calls for new pain strategy: Patient groups say tens of thousands suffer in agony”

In this article, it says, “...waiting times for pain care in Canada grow longer by the day... Many patients who need opioids to help control pain can't find a family doctor willing to treat them... Even children are suffering under-treated and poorly managed pain.... Those living with chronic pain experience stigma, discrimination and the ‘shame of pain, when we are labelled as complainers, malingerers and drug seekers,’ (said Lynn Cooper, president of the Canadian Pain Coalition)... ‘Canada as a developed country has a moral imperative to do better than this.’”

To Mary Bono Mack and all other politicians out there who want to try to tell us how much pain we are feeling and dictate to our doctors what medications are allowed to be used: take a look at Canada. 

Here in the United States, the Institute of Medicine (IOM) report commissioned by Congress found that 116 million Americans suffer from chronic pain and are inadequately treated.”

From this article: 
“...the majority of people with pain use their prescription drugs properly, are not a source of misuse, and should not be stigmatized or denied access because of the misdeeds or carelessness of others... Ironically, while many people with pain have difficulty obtaining opioid medications, nonmedical users appear to obtain them far too easily.”

“Pain patients have long been viewed with skepticism and suspicion, rather than understanding, presenting a barrier to care. Rising rates of prescription drug misuse, addiction and overdose have further led to the establishment of legal and regulatory barriers, such as prescription databases, that can prevent even legitimate pain patients from getting much-needed drugs.”

“Making matters worse is the media and political attention that has been devoted to painkiller abuse and addiction. Conversely, very little attention is given to chronic pain, which affects a far greater number of people. About 9.3% of the population has drug or alcohol problems serious enough to require treatment, while severe chronic pain affects at least one in three Americans.”

As a pain patient, I feel like we are being punished for just trying to live our lives. When I look at how serious the situation is for those of us living in Washington state, I get really scared. When I see what’s happening in Canada, I worry it could happen here. When I see legislation pending like Mack’s bill in Congress, I fear we will be sacrificed because of those who can’t control or do not want to control their behavior. I’m frightened of having our pain levels judged and being told we don’t suffer enough.

It’s awful to hear about people, particularly teens, who overdose. However, making a sweeping decision that opioids are “bad” and then blocking them from thousands of patients who use them legitimately, safely, and with great success is only going to make the situation worse. Where is the compassion for us? 


CALL TO ACTION: 
You can track the progress of this bill in Congress. From that page, you can also send your opinion to Rep. Mary Bono Mack.

Tuesday, May 1, 2012

Tuesday-Newsday #62

It’s time for Tuesday-Newsday! The featured blog post this week is, “The Good Times,” from the PainSupportUK newsletter by Jan Sadler.

Let Me Know: If you’d like me to watch for articles on your pain condition, just drop me a note in the comments section below.

WARNING:  My goal is to provide the most up-to-date news I can, which you can then take to your personal doctor and debate the merits of before you try it. I do not endorse any of the docs, treatments, info, and meds in anything I post nor can I guarantee they are all effective, especially not for everyone. I always include the citation, source, or website so you know where it came from. As is the case with any health info, ALWAYS get your doctor's opinion first!
====++++====++++====++++====++++====++++===


*CHRONIC PAIN





*PAIN Rx






*FIBROMYALGIA and CHRONIC FATIGUE SYNDROME








*PSORIASIS






*ANKYLOSING SPONDYLITIS





*MIGRAINES









*FEATURED BLOG POST

from the PainSupport Newsletter by Jan Sadler