Sunday, May 24, 2009

What do The Tough do when they get ANOTHER ICI diagnosis (or two*)?

Call Mom from the parking lot of the doctor's office to tell her about it and sob a bit. After all, I did hold it in until I was clear of the office out of respect for my wonderful rheumatologist, Dr. James Mossell III of Tifton, GA - we joked about what bad PR it would be for a patient to walk out through the waiting room full of patients-to-be-seen, in tears.

Go to favorite Thai restaurant and order whatever I want.

Go hang out in Wal-Mart for several hours. (In my defense I WAS looking at the line of Danskin workout wear; very affordable, very functional, and they remind me of my dancing days.)

Get back to the car and remember it all over - and start crying again.

Have the words "Thy will be done" come to me out of nowhere.

Realize that in the past it's taken literally YEARS after a diagnosis for me to get to this point of acceptance. This time it took about four hours. I'm finding the cycle of acceptance to be a kind of reincarnation thing. It's a never-ending cycle but each time through happens at a higher level.

Go home and get on with facing the music.

*New diagnoses: Herniated cervical disc plus several more bulging cervical discs, and mild cerebral atrophy which is probably unusual for a person my age (possibly related to Fibromyalgia1).

1Accelerated Brain Gray Matter Loss in Fibromyalgia Patients: Premature Aging of the Brain?, The Journal of Neuroscience, April 11, 2007, 27(15):4004-4007; doi:10.1523/JNEUROSCI.0098-07.2007

Tuesday, May 12, 2009

Today is International Awareness Day, and there are an unprecedented number of ways to participate without ever leaving home

Origin of the event

The May 12 Awareness Day event was founded by Tom Hennessy in 1992, and here's the story. (CIND stands for Chronic Immunological and Neurological Diseases and these diseases include Neurofibromatosis, Chronic Fatigue Immune Dysfunction Syndrome (CFIDS)/Myalgic Encephalomyelitis, Fibromyalgia, Gulf War Syndrome and Multiple Chemical Sensitivity.)

This is an excellent interview with Mr. Hennessy by Cort Johnson of Phoenix Rising.

The May 12th date was chosen to memorialize the birth date of Florence Nightingale, the English army nurse who inspired the founding of the International Red Cross.

Stuff to read, watch, listen to or do

CFS State of the Union podcast by Dr. Teitelbaum

What You'll Learn

Dr. T's podcast will update listeners on the following topics:

  • Latest CFS/FM news — U.S. and global.
  • Recent and upcoming research and findings.
  • New treatments (pharmaceutical and natural therapies).
  • Center for Disease Control CFS Awareness Campaign.
  • Outlook for CSF sufferers — there is hope!
  • How to find help/support groups/other resources.

The American Pain Foundation has an excellent collection of Awareness Day information and links including one of my personal favorites, the Pain and Creativity Project. There are some really stupendous works of art in this twelve page .pdf display of paintings and poetry.

This is called Passages and it's from Olga Gerrard via Flickr:

"For some time, I have been grappling with the reality of a body that is far from perfect. I'm not talking about issues of weight, anorexia, wanting to be a model - I'm dealing with a body that once would carry me running over mountains 20 miles at a time, ski down hills for days on end, that was able to support me through every day, every adventure, every passionate embrace, and a gratifying career.

"Through the intricacies of some weak genes, my once dependable (but mortal) coil turned on me. Along for the ride, my brain chemistry has skewed. It is a cruel thing, and I just loathe the facts. And yet, there are so many people that have far more serious issues to deal with than do I, and I have a whole new appreciation for the strength of will and character that it requires to go through life with disabilities and challenges that the "average" human does not have to endure.

"Through my illnesses, I have found heroes- the caretakers of the sick and ailing, those who dedicate their lives to bettering the quality of life for others, and do so for pennies, compared to what someone like Paris Hilton gets paid for being - nothing.

"I’m changing. As I become weaker, I find strength I did not know existed previously. As I shed tears, I cast off prior assumptions. Life is an interesting journey, and no matter how well prepared you feel you may be, you just never know what waits tomorrow.
Passages on life's way. "

Passages, originally uploaded by Olga Gerrard (going off the grid again, CU soon).

The National Fibromyalgia Association has been doing weekly podcasts, and their 2009 Awareness Program "Fibromyalgia Affects Everyone" includes a guide to telling to telling your personal story.

The Fibromyalgia Network has excellent advocacy and awareness resources.

CFIDS Association of America has an Awareness Day packet with some good info.

PANDORA, Inc. has a great 2009 Awareness Day poster.

You might also want to check out...

World ME & FM Meditation and Prayer Day

for FM Awareness Day

Sparkle for the cause with a FM awareness bracelet in Swavorski crystals at SparkleAndSupport.com

If you've ever been frustrated by the lack of appreciation of the role of invisible chronic illness in functional disability, please vote

Interagency Committee on Disability Research (ICDR) Utilizing Online Technology to Determine New Research Directions

An ICIE reader has notified me about this ICDR week long period to vote on shaping disability agendas. She has submitted a comment to expand disability to appreciate the role of invisible chronic illness in functional disability.

Please help encourage awareness of invisible chronic illness by voting to prioritize this research issue.

For more information and complete instructions visit the Web site: www.icdr.us/stakeholders and follow the registration and voting procedures.

A couple of hints:

After you register go to http://www.icdr.us/stakeholders/comments.aspx.

Then go to "Topic 6: Other Critical Research Issues"

The fourth comment down is this

"Presently, disability encompasses a heterogeneous population, and this variability in cause and nature of impairment are weakly represented within the disability dialogue and literature. Traditionally and by popular understanding, disability evokes the image of a congenital or accident-based disorder involving a visible impairment of the body such as a missing appendage or sensory faculty. However, increasingly a significant population that are experiencing disability are doing so via invisible causes such as the wide array of chronic illnesses that are rising within our population. Most noteably, there is a population increase in a wide array of auto-immune disorders that are challenging to diagnose, poorly understood, and given little visibility (See “The Autoimmune Epidemic” by Donna Jackson Nakazawa). In order for disability research to be a true reflection of the subpopulation that is currently prevented from functioning within work and home, and which will thus become a major social cost to attend to late in the game, we must create a stronger awareness of the role of invisible chronic illness as it exists and is rising within our population."

4/21/2009 1:54:18 PM

The sixth comment down is this:

"Ever increasing numbers of US citizens are affected by serious chronic illness. Many are seeking postsecondary education so as to increase the chance of their employability. The proportion of children and adolescents who face activity limitations for long-term health reasons has increased from 1.8% in 1960 to more than 7% in 2004. Others, both young adults and older adults returning to school, have developed illnesses such as diabetes, multiple sclerosis, chronic fatigue syndrome, Gulf War illness, and other conditions. Because there is little understanding of their conditions and of the reasonable accommodations that might enable them to succeed in college, many do not graduate. However, without a degree, this group, which typically cannot do manual labor, will find itself on welfare. Research is desperately needed to determine the numbers of current and aspiring postsecondary students with serious chronic illness, the types of illnesses, the extent and types of disability experienced, and the accommodations that can help them to be successful"

4/16/2009 1:31:56 PM Lynn Royster Chronic Illness Initiative, DePaul University

You can vote for each comment several times.

Thursday, May 7, 2009

Advocacy Action Alert from the National Pain Foundation

Advocacy Action Alert: Media

Dear APF Advocates,

In recent days the national media has been covering celebrity Paula Abdul’s struggle with pain and her interview that appears in the June issue of Ladies' Home Journal. In this coverage, inaccurate information has been reported that reinforces stigmas and stereotypes associated with pain and pain treatment. Ladies' Home Journal implies negative connotations associated with prescribed pain medication and uses the term “habit” when discussing Abdul’s use of pain medication. Read article>>

On Monday, May 4th Fox & Friends anchor Gretchen Carlson mentioned her own recent injury and the use of prescription pain medicine. Gretchen stated she is taking pain medication and “has not become addicted so far.” The link is no longer active.

On Wednesday, May 6th CBS Early Show also discussed this topic and Medical Correspondent Dr. Jennifer Ashton inaccurately called pain medications “narcotics” and failed to differentiate between pain medication dependence, tolerance and addiction when she listed the signs of addiction. View>>


APF encourages national media to bring attention to the topic of pain in a responsible and balanced way. We have contacted these media outlets and encourage you to contact Ladies' Home Journal, Fox & Friends and CBS Early Show requesting that their coverage provide balanced and accurate information pertaining to prescription pain medication.

To help in crafting your response, please view pages 27-33 in the Reporter’s Guide: Covering Pain and Its Management. These pages will give you some specific information on opioid use and the correct definitions of addiction, dependence, tolerance and abuse. Click here.

Please include any personal stories on how these perpetual stigmas have affected you or a family member. Keeping in mind that each person's struggle with pain is unique, please respond to the news coverage only, as opposed to commenting on Ms. Abdul’s experience. Remember, our voices will be heard when we stand together.

To submit a comment to Ladies' Home Journal, click here.

To submit a comment to Fox & Friends, send an e-mail to: newsmanager@foxnews.com.

To submit a comment to CBS Early Show, click here.
(Scroll down to the bottom of page and click on the “Contact Us” tab at the bottom of your screen)

We would greatly appreciate it if you let us know if you've taken action. Please feel free to simply cut and paste your message into an email to us at media@painfoundation.org.

My comment to the Ladies Home Journal RE: the Paula Abdul article:

LHJ would do well to study up on the American Pain Foundation's "A Reporter's Guide: Covering Pain and It's Management." They got a lot of things wrong in this article. That's in addition to their overlooking the fact that RSD is a lifetime chronic illness and not something you just get over by leading a balanced life - but maybe that's just Paula Abdul trying to cover up that she has RSD so she can get another job. Anyone who lives with CI knows it's hard to get work once the CI has been disclosed...

The APF says it better than I can. On what LHJ got wrong: "In recent days the national media has been covering celebrity Paula Abdul’s struggle with pain and her interview that appears in the June issue of Ladies' Home Journal. In this coverage, inaccurate information has been reported that reinforces stigmas and stereotypes associated with pain and pain treatment. Ladies' Home Journal implies negative connotations associated with prescribed pain medication and uses the term “habit” when discussing Abdul’s use of pain medication."

I'm personally allergic to all opioid-type meds so I don't keep up with the details of the ongoing legal battles over it, but if I need to know anything I check with the APF.

Sherril Johnson
The Invisible Chronic Illness Experience Blog

And the comments continue to pour in to the LHJ: five more just since mine was posted.

Tuesday, May 5, 2009

Catching up, & the 2009 version of negative publicity for Fibromyalgia originating with the Associated Press article of February

Well, I'm behind on my blog posting; there have been some big time things going on that I haven't even written about. I've been kind of out of it lately, what with figuring out how to deal with my new diagnoses (Hashimoto's disease, pre-pre-diabetes, severe adrenal fatigue, and low hormone levels for which my rheumy wants to do an MRI of my brain (?!)); and my father has been having some health issues since knee replacement surgery in November of '08. I just got back from visiting him and his wife for a couple of weeks. The good news is they live in Santa Fe, NM and I had a wonderful visit with family, did some shopping and sight seeing - the Georgia O'Keeffe Museum was my favorite - and I was able to help Dad and his wife out some. The bad news is I'm crashing big time after the trip.

The view from Dad's driveway in southwest Santa Fe

Anyway, while I put myself back to rights, I'll be doing some catching up on blog posts. Awareness Day (of chronic, immunological and neurological diseases) is May 12, so I'll be focusing on that a lot.

First order of business: Back in February there was an article published by the Associated Press titled:

"AP IMPACT: Drugmakers' push boosts 'murky' ailment"

The murky ailment is, of course, Fibromyalgia. The article was in all the major news sources, and lots of minor ones. It was about the same time last year that the NYT article came out. It was a similar sensationalistic piece of crap, without big pharma to pile the blame on. I did a series of blog posts on the NYT article debacle last year (look here for a list of those posts), and I feel the same coming on for this situation. When I first saw this year's article back in February, I googled the title and was greeted with 3,550 potential results. A few days later there were 17,600 results. Last week there were "only" 852 results, today 644. So last year we just had some bad PR in ONE of the most influential newspapers in the world. This year it's in different news sources all over the world.

Buy hey, we'll get past it. Some PR types even say that as long as FM is being discussed, it's all good.

So here's the actual article, several versions from several sources. Take your pick.
This article is pretty damning, and as you can see it has sown its seed all over the country, courtesy of the AP's feed and Permission to Reprint feature. The article quotes the same major characters involved in the NYT article last year, plus a few more.

Do you think the author of this article is credible? There's this site called NewsCred where you can voice your opinion on that topic. It's quick to register and I think Mr. Perrone could stand to lose some credibility for the fact that he reported on so little of the research going on about FM, and he talked to so few of the many, many CREDIBLE doctors we have that understand FM.

The NFA has been contacting media outlets that published Mr. Perrone’s article across the nation. In addition to sharing the disappointment of the fibromyalgia community, their response provides accurate information about fibromyalgia, including the science behind fibromyalgia and the lack of research funding.

You can find a lot more information on the National Fibromyalgia Association's page NFA Responds to AP Article, including:
  • The NFA's response
  • How to contact the AP
  • 10 ways to respond to negative and false Information about fibromyalgia
  • Fibromyalgia Fact Sheet
  • An overview on Recognition, Research and Science

Several points made in the AP article were addressed by fibromyalgia experts on February 11, 2009 during a medical talk show produced by Patient Power. Guests included leading FM researcher Daniel Clauw, MD, professor of medicine in the Division of Rheumatology, University of Michigan Health System; Martha Beck, Ph.D., who has been diagnosed with fibromyalgia; and Lynne Matallana, president and founder of the National Fibromyalgia Association.

Andrew's V-Blog from Patient Power on Vimeo.

A tumblin' tumble weed pauses long enough for me to snap a pic.

Saturday, May 2, 2009

Woman Challenge 2009

Well, I've had a year to think about it, since Jenni of ChronicBabe.com alerted me to it last year, and this year I'm gonna do it. The Woman Challenge, that is.

In setting up your goals they only specify moderate or vigorous activity, plus muscle strengthening activities, but we can certainly modify that to whatever is within our reach right now. I was going to say that for me that will be - let's see, what's the opposite of vigorous?... but I just looked up moderate in the thesaurus, and I can go with these synonyms where I was having a hard time with "moderate": balanced, bearable, careful, cautious, conservative, considered, controlled, cool, deliberate, disciplined, even, gentle, judicious, limited, low-key, measured, middle-of-the-road, mild, modest, not excessive, pleasant, reasonable, soft, steady, tame, tolerable, and tranquil.

It starts on Mother's Day and I hope if any of you join me, you'll let me know how it's going for you.

What is the Woman Challenge?

This May, thousands of women across the country will embark on an eight-week physical activity challenge for better health. They will be part of the Woman Challenge, a program of the U.S. Department of Health and Human Services' Office on Women's Health (OWH). Woman Challenge is a part of the OWH year-long Woman Activity Tracker program and its launch will kick off the 10th annual National Women's Health Week (May 10-16, 2009). The Woman Challenge encourages women to get at least 2 hours and 30 minutes of moderate-intensity aerobic physical activity each week.


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