The ICI Experience:

A Health Activist's Guide to Effective Online Advocacy

2012-01-03T20:12:00.000-05:00

Check out this slide show from WEGO Health:

A Health Activist's Guide to Effective Online Advocacy I think it's pretty cool.

View more presentations from WEGO Health

Off topic, The ICIE's email subscription service has been having some problems, as in it hasn't been working for the last two blog posts. I hope it's fixed now because I really don't want to have to mess around with trying to figure out what's wrong any more than I already have.

New IBS Book - Sophie's Story: My 20-Year Battle with Irritable Bowel Syndrome

2011-12-14T14:40:00.000-05:00

I found out about this book when Sophie emailed me, complimenting my blog (that will get you a mention on The ICIE anytime you're promoting a product I like or think is valid - you Viagra people and your ilk can forget about it). Sophie noted that I also live with IBS, and asked me to link to her book on my blog. You can check it out on her website mentioned in the next paragraph. I haven't read the book yet but from the excerpts, it sounds good and so far it has 5 stars from ten reviewers on amazon.com.

Sophie also has an excellent website called IBS Tales, with lots of "I've been there too" stories and helpful info including a page about the book that includes a sneak peek at the contents and introduction.

Rosalind Joffe of Working with Chronic Illness interviewed Sophie yesterday and has written up a nice article titled One Person's Story. This interview really touched me because my experience with work and an extreme IBS flare was similar to Sophie's. I didn't talk about the problem in the right way with the right people because I was embarassed and I ended up being forced to resign from the job. It was hard for me to tell people in authority, whether they were male or female, that I was having violent and frequent diarrhea and cramping and that it was so iffy as to whether I could make it to the bathroom in time or not that I was wearing sanitary napkins. Long story short I was having to spend a lot of time in the bathroom. And that was when I was sitting at home relaxing in my recliner, a few feet from the bathroom. Shall I mention the horrible smell that traveled way out of the bathroom no matter what kind of air freshener I used? Maybe if I had gone into all this at my job they would have been more willing to provide the accommodations I was asking for... Live and learn.

An aside: We can all thank (or blame) WEGO Health's slide presentation titled A Health Activist's Guide to Effective Online Advocacy for the honesty in the previous paragraph.

While we're on the topic of IBS, the website I have so far found to be the most helpful with my IBS symptoms is Help for IBS by Heather Van Vorous, an IBS sufferer since age 9. She also has a line of products called Heather's Tummy Care. I've ordered lots of things from her site and have always found the quality and service to be excellent. The quality of the organic peppermint tea is so different from what I buy in the store that it's almost not even the same product. I carry the IBS Diet Cheat Sheet in my purse at all times so I'll always have it at the grocery store or restaurant when I need it. You can get a copy for free on the Help for IBS home page.

Back to Sophie's book. Good luck to Sophie with sales, and I know it's going to help a lot of people!

WEGO Health is making November "National Health Blog Post Month"

2011-11-09T11:46:00.002-05:00

I'm a little late getting on the band wagon here; in my own defense I will say that I am blogging in the midst of boxes that have yet to be unpacked and furniture that has yet to find a permanent home. But The Blog must go on!

November has been NaBloPoMo, or National Blog Posting Month, since 2006. If you're interested in that history, check here. Wego Health is adding the word "health" to the mix and now we have National Health Blog Post Month. I'm just getting into this and am still checking out all the resources available on these sites but so far I'm really impressed. You can look at blogs posted by others or add your own blog posts to the Wego Health site. They also have their own health blog at blog.wegohealth.com that I think is really good.

A pet peeve of mine ever since I heard about NaBloPoMo about four years ago is why do they make these things happen in November? November is an already abnormally busy month for normal people (those of us living with ICI have our own additional challenges during this time) what with the Thanksgiving holiday, and some forward thinking people are even preparing for Christmas in November. Why can't it be in February, in the dead of winter? Or even in July or August, in the heat of summer? (WEGO seems to be answering my question/problem by doing a HAWMC in April also! Maybe they'll do it again next year and I'll give it a real Girl Scout try to do a post every day...)

My point here is that I've tried to do NaBloPoMo in November a couple of times and I'm ready to admit that as long as it's in November I will never be able to do a blog post every day of that month. But I CAN throw a post out there whenever I'm inspired to do so by the new HAWMC - Health Activist Writer's Month Challenge - prompts. Sign up and they will email you the prompts in PDF format. And there's no pressure to actually post every day:

"...even if you’re not sure if you want to post every day and simply want to check out all the fun prompts (that cover a range of topics from being a patient, to being a blogger, to simply pondering your existence) – you can sign up here!"

Long time no blog post...

2011-10-26T17:02:00.000-04:00

Well, I've been busy moving. And trying not to hurt myself while moving.

My friend Aviva at Sick Momma got me thinking about lack of blog posting and the chronically sick person's typical reasons why not, with her post That Which Doesn't Kill Me Makes Me Stronger. Right? (I had to look up who said that so I'll share it with you: Friedrich Nietzsche, from The Twilight of the Idols "Maxims and Arrows" sec. 8. The original was actually "Out of life's school of war: What does not destroy me, makes me stronger.")

I'm not dead yet and I'm far from destroyed. My back and neck problems aren't much worse now than they were before the move in August, so maybe I am stronger now. I'm trying to keep up with the physical therapy for my back that I started before the move and I have added some very mild therapy exercises for my neck. I'm also walking some because we don't have a fence yet and the dog needs me to do that with her.

So blog post ideas are coming to me again and I expect I will start posting with some hint of regularity soon. I've missed you blog world!

Photo courtesy of webmink on flickr. Click on the image to go there.

A survey about patient bloggers - for the ICIE's 4th anniversary

2011-05-19T20:23:00.080-04:00

I started the ICIE blog on May 19, 2007. I was recently told I was an "early adopter" in this respect (by Meredith Gould in the comments to her post Fibromyalgia Awareness Day and Why I Give A Hoot), and I was wondering what kind of post to do to celebrate my blog's creation when I read about the Tufts University Medical School Patient Blogging Survey on Trish Torrey's about.com Patient Empowerment blog in the post Are you a patient? Do you blog? Survey Sez...

(Of course that's bloggers who are medical patients, as opposed to bloggers who are cool, calm and collected.)

I took the survey, thought it was short and very interesting, and am looking forward to reading about the results.

The more respondents they have the more accurate the results. If you have a patient blog please think about taking a few minutes to complete the survey:

"Lisa Gualtieri teaches health communications at Tufts University. She and her colleagues have put together a survey to learn more about patient bloggers, why they blog, what the results are, and more. If you write a patient blog, and you complete their survey, you may be entered in a drawing for Amazon gift certificates, too (That is, if you choose to include your personal information, which is not a requirement.) Here's a link to the Tufts Patient Blogging Survey."
From Are you a patient? Do you blog? Survey Sez... by Trish Torrey

Fibromyalgia Awareness Day Guest Post by Toni Marshall of The Northern Virginia (NOVA) CFS/ME, FMS, & OI Support Group: Awareness Benefits Me

2011-05-13T20:22:00.001-04:00

Blogger was down yesterday and most of today so this is one day late.

Toni and I met at the National Fibromyalgia Association's Leaders Against Pain conference in August of 2008. She's an active member of the very active and long standing Northern Virginia (NOVA) CFS/ME, FMS & OI (Orthostatic Intolerance) support group (http://cfsnova.com).

Toni is a prolific writer and I'm really happy and grateful to be able to share her observations on Awareness Day with you today. She is always very generous about sharing her experiences in helpful and non-judgmental ways. (If you are interested in a little more background information about the history of the May 12th Awareness Day, check out the blog post I did in 2009, "Today is International Awareness Day, and there are an unprecedented number of ways to participate without ever leaving home.")

Without further adieu, here is Toni's article.

Awareness Benefits Me

I am grateful to know of Florence Nightingale's long suffering the last 20 years of her life (1820-1910) through Awareness Day thanks to Tom Hennessey, Jr, who established it through his own ME advocacy group, RESCIND.

I think of Nightingale's last 20 years in her time often. She was isolated though living with family. There were no telephones, no Internet, no Facebook, no Twitter, only paper and pens for writing letters, the postal service, newspapers. At least she had paper and pen and family. But families can be thorny relationships, especially when chronically ill.

While I'm grateful for Nightingale's birthday as a set point to consider our similar conditions to Nightingale's, bringing awareness to others as often advocated by support groups feels like too much work for me.

Maybe those who are new to these conditions or those living with partners, spouses or other care-givers feel moved to write to members of Congress, the president and various government health agencies asking for attention, for a cure, for help.

I find such efforts are overwhelming.

Efforts to let people know we who suffer these fairly invisible conditions are here and needy of resources are way too much for me to consider even though I now feel better more of the time than when first diagnosed in 1997.

I am finally able to appreciate I am too disabled to do much else but pay attention to and care for myself.

When I was first diagnosed and for several years afterwards, I felt pulled to DO something, had the drive to lobby and write a few letters, attending meetings and giving testimony to the federal CFS Advisory Committee, even appearing on a local Fox television news show talking about my illness, my losses, crying about "losing" "family and friends."

I didn't handle those outings at all well. I complained to organizers about other lobbying patients' behaviors. I did not express myself well to those I lobbied. My efforts made me much sicker for weeks or months afterwards as well as on the days I traveled to be there sitting up and moving around far too much for someone with severe Orthostatic Intolerance (which is a form of Dysautonomia underlying many cases of CFS and FM).

Awareness efforts seem to have benefited me the most. All those outward awareness and lobbying efforts going so badly, wearing me out so consistently, taught me to stay home. Paying attention to my body, my own self-care and then discovering gratitude practice for what is going well in my life interrupted the cycle of overdoing which is so detrimental to my body. With gratitude practice, I am calmer, more attune to what I have even with my limitations.

I’m fortunate and grateful to have help around the house. This was obtained through a rehabilitation center who wrote to Developmental Disabilities Agency of the Federal Department of Health and Human Services agency (DHHS) on my behalf. Several years later, in person help arrived after I was placed in "emergency" status with a local helping agency.

It is more than enough to have to discuss my disabilities with those coordinators and aides who help me in my home.

My family, for the most part, are very busy. They find my disabling conditions overwhelming and painful to witness. Several family members suffer similarly as I did at their younger ages. Fear of becoming disabled like me makes it especially painful for family as I arrive horribly sick from my effort to get to, or, having had a car accident on the way to a family event.

Awareness of our conditions in all of their intricacies and layers of contributing behaviors is most important for healing. I learned from other support group members about my conditions and how they are related and overlap which was a college class-worthy education. Then it took years to incorporate what I had learned into living with my conditions. I'm still incorporating what I have learned 13-1/2 years later.

Knowledgeable support group members offer valuable information about these similar, overlapping conditions. Doctors usually have not experienced such symptoms and don't have time to discuss how our conditions and activities influence our bodies.

We are teaching our doctors by discussing, as best we can, in intimate detail, how we live with these conditions. Every helping practitioner appointment is an awareness opportunity for both the practitioner and me.

I find it an enormous amount of work to pay attention to how my body is doing on the supplements, foods, medication I take in. it's a lot of work to notice how my body is handling teleconferences and trips to the doc or shopping. I never realized, for instance, until I was so disabled, how many separate tasks are involved in "shopping." To notice how I, my body, is doing is work worth the effort when I am able to do it.

Awareness of, paying attention to ourselves and how we are, how we behave in as many situations as we can handle may seem self-conscious, self-centered, self-obsessive. Perhaps it is more that I am overcoming self-neglect with self-love and self-acceptance.

I am grateful for the enormous amount of awareness of myself and my body I have learned, am learning, since accepting how truly disabled I am. I am grateful to realize how my disability means doing anything causes symptoms in the moment or in a day or two which lasts days, weeks, months.

I no longer enjoy the luxury of spending energy on protesting or pointing out what is lacking in the world. Nor do I continue to ask that anyone else make their conditions worse by fighting on my behalf.

Becoming aware of and adjusting my life for my disabilities is more than enough for me to do. Becoming aware of all for which there is to be grateful is more than enough for me to do. Writing and talking from my recliner on a laptop and phone about these things for and with those suffering similarly which helps me become more aware is more than enough for me to do. These are the efforts that are worth it for me today in my new awareness.

Toni Marshall

May 12, 2011

cfsnova.com

You know I had to stick a picture in here somewhere!

Bloggers Unite for Fibromyalgia Awareness Day May 12, 2011

2011-04-22T00:11:00.027-04:00

Update as of 5/13/11:

I was out of town for three days; when I returned on 5/11 I discovered that my FM Awareness Day Bloggers Unite Event was no longer accessible. When I left it was in "Accepted" status and when I returned it was in "Declined" status.

This is my best guess as to what happened. An anonymous blogger organized a FM Awareness Day Bloggers Unite Event in 2009. She disappeared after that event and there was no event in 2010. I could not find any way to contact the person who did the event in 2009 to ask her about it so I applied for a new FMAD event with BU in my own name and was accepted. At some point after my event was accepted, the original person came back and reactivated her 2009 FM Awareness Day Bloggers Unite Event for 2011. For awhile both events by different people were online at the same time but now my event has been "declined" and is no longer accessible.

My guess is that there can only be one event per topic and since hers was older, mine got dumped.

Kind of discouraging, but I've encouraged everyone to sign their blog post up to participate on the other event at http://www.bloggersunite.org/event/fibromyalgia-awareness-day.

Just wanted to let you all know about this, and be sure to check out the Bloggers Unite FM Awareness Day posts at http://www.bloggersunite.org/event/fibromyalgia-awareness-day/posts. There are some good ones.

Original post:

May 12 is Fibromyalgia Awareness Day, a worldwide effort to bring together people who live with fibromyalgia and those who love them. The National Fibromyalgia & Chronic Pain Association is asking bloggers to join together in support of Fibromyalgia Awareness Day by publishing a blog post about fibromyalgia on May 12. For more information or to sign up go to http://www.bloggersunite.org/event/fibromyalgia-awareness-day-1.

The Social Security Administration does not like negative publicity

2011-02-26T19:04:00.003-05:00

I blogged about my Social Security Disability case back in November. As that post is now in my top ten most popular, and I am still waiting for the answer to my appeal to the Hearing Decision, I thought I would run these little tidbits. The first is from a group called the Social Security Disability Coalition:

"It is very important to tell all the media outlets you can (newspapers, TV, radio) about your problems with the Social Security Disability process, the Social Security Disability Reform Petition, The Fullerton - Edwards Social Security Disability Reform Act, and the Social Security Disability Coalition. This way they will see how widespread these problems are and that you are not the only one going through this. Also keep in mind that under Social Security Policy DI 23020.005 - One of the criteria for Critical Cases are those with adverse public relations potential. When the SSA becomes aware of a critical case situation, it is supposed to complete all actions on the case as soon as possible. The SSA does not like negative publicity and often claims "surprisingly" get approved soon after a claimant's story is featured in the media. You can find and contact the all media outlets in your area and around the country through the Congress.org Media Guide."

Social Security Disability Coalition
Congress.org Media Guide
NOTE: If you get any media interest have them contact us at: ssdcoalition@hotmail.com

The second tidbit is a review of the statistics on the two Georgia hearing judges that I used in my previous post. The stats are from the ALJ Disposition Data website and they are still the same because the website has not been updated since my last post. Hopefully they will finish out 2010 one of these days so I can have a complete picture of the year comparing the judge who made my hearing decision with the judge who made my three friends' Fully Favorable hearing decisions at about the same time.

Once again, to summarize the 2010 stats through 9/24/10 from the spreadsheet in my previous post:

Judge Russell Lewis' (my hearing judge) decisions are Fully Favorable 45% of the time; Judge Calvin Washington's (my three friends judge) decisions are Fully Favorable 89% of the time.

Judge Lewis' decisions are Denials 39% of the time; Judge Washington's decisions are Denials 8% of the time.

Judge Lewis' decisions are Partially Favorable 16% of the time. Judge Washington's are decisions are Partially Favorable 3% of the time.

Now I'm going to try the Congress.org Media Guide suggested by the Social Security Disability Coalition.

If you think that this obvious lack of objectivity and consistency in SSD hearing decisions is as wrong as I do, please do whatever you can to publicize this problem.

Thank you!

"I'm Thankful" song says it all for me

2010-11-11T15:26:00.000-05:00

I'm back from the second root canal in two weeks. I'm still sleeping a lot and am grateful that I can take the time I need for recovery.

About the song; it says a lot for me, anyway... (If this video is skipping on your computer, or you can't see it in the email of this post, here's the direct link to it: The Gratitude Song.)

From The Worldwide Gratitude Project , a wonderful project to help us express our gratitude. I'll admit that I have a hard time seeing the good things in my life right now. Any help I can get is much appreciated! I hope you find something there to help you express your gratiude.

Merton's Prayer for Peace

2010-11-07T17:59:00.000-05:00

A prayer for Sunday's post seems appropriate. Although I'm getting this post out so late that subscribers might not get it until Monday. Speaking of Monday, I have to have a root canal tomorrow. I forgot about that when I decided to try NaBloPoMo again. I'm not going to try to post tomorrow, which takes me out of the NaBloPoMo competition. I'll have to see how the root canal goes before I decide how often I'm going to try to post for the rest of the month.

This Prayer for Peace was written by Thomas Merton, read in Congress on April 18, 1962 and placed in the Congressional Record. It was at the request of Frank Kowalksi, Congressman from Connecticut. In 1962 the Vietnam War was happening, but it seems to be totally applicable here and now. It also seems to me that it's a prayer that might be accepted by most religions.

What does this have to do with chronic illness, you might ask? I'll tell you what I think about that at the end of this post.

Prayer for Peace

Almighty and merciful God, Father of all men, Creator and ruler of the universe,
Lord of all history, whose designs are without blemish, whose compassion for
the errors of men is inexhaustible, in your will is our peace.

Mercifully hear this prayer which rises to you from the tumult and desperation
of a world in which you are forgotten, in which your name is not invoked,
your laws are derided and your presence is ignored. Because we do not
know you, we have no peace.

From the heart of an eternal silence, you have watched the rise of empires
and have seen the smoke of their downfall. You have witnessed the impious
fury of ten thousand fratricidal wars, in which great powers have torn whole
continents to shreds in the name of peace and justice.

A day of ominous decision has now dawned on this free nation. Save us then
from our obsessions! Open our eyes, dissipate our confusions, teach us
to understand ourselves and our adversary. Let us never forget that sins
against the law of love are punishable by loss of faith, and those
without faith stop at no crime to achieve their ends!

Help us to be masters of the weapons that threaten to master us.
Help us to use our science for peace and plenty, not for war and
destruction. Save us from the compulsion to follow our adversaries
in all that we most hate, confirming them in their hatred and
suspicion of us. Resolve our inner contradictions, which now
grow beyond belief and beyond bearing. They are at once a torment
and a blessing: for if you had not left us the light of conscience,
we would not have to endure them. Teach us to wait and trust.

Grant light, grant strength and patience to all who work for peace.
But grant us above all to see that our ways are not necessarily
your ways, that we cannot fully penetrate the mystery of your
designs and that the very storm of power now raging on this earth
reveals your hidden will and your inscrutable decision.

Grant us to see your face in the lightning of this cosmic storm,
O God of holiness, merciful to men. Grant us to seek peace where
it is truly found. In your will, O God, is our peace.

Amen.

Thomas Merton (1915-1968)

Incidental Writings

And that the very storm of power now raging on this earth
Reveals your hidden will and our inscrutable decision.
Grants us to see your face in the lightning of this cosmic storm,
O God of holiness, merciful to men:
Grant us to seek peace where it is truly found!
In your will, O God, is our peace!
Amen

What is the real face of Thomas Merton?

"When he painted the portrait of his friend Merton standing near the Abbey of Gethsemani in Kentucky (below), Ed Rice deliberately blanked out Tom's face. He confessed to being confused. Over the years, the scholars, the followers, publishers, the church itself, had drawn a portrait that was unrecognizable, that of a plastic saint, a monk interested mainly in pulling nonbelievers, and believers in other faiths, into the one true religion. This was not the Merton that his friends from younger days and later days, Jim Knight and Ed Rice, knew. Merton was eminently human. He honored, and reached out to other faiths. He loved, he laughed. In essence he was a poet, who used words to help us understand the thousands of things we need to understand. This is his portrait, as recalled by his very close friends."

~Jim Knight

As promised, here's what this has to do with chronic illness.

All this talk about war, even though it's poetic and in the spirit of peace, makes me wonder 'What if?' What if there was a disaster where I live? I have some friends who lived through Hurricane Ike in 2008 at Crystal Beach, TX; but they lost everything (See Hurricane Ike hits me where I used to live:Crystal Beach, Texas). They lost their home, their business, everything but their lives and what they took with them when they evacuated. After things had settled down some, I asked my friend if she knew anything about what was happening to people with chronic illness. She thought for awhile, then she said simply, 'I think they just die.'

And on the up side, be prepared. Check out Ready.gov for how to do that. They even have a link for people with disabilities that applies to those with chronic illness - invisible or not - instead of just those with wheelchairs and or blindness or deafness. I find that to be very rare when the general term "disability" is used.

If we do all the things suggested, I think we will as ready for disaster as we can be. Not that I've done it all. Maybe this post will inspire me to do something instead of just worrying about 'What if?'

Peaceful Warrior

2010-11-06T03:05:00.012-04:00

I usually don't like to use the term warrior, or any other word that makes me think of war or violence, to describe my relationship with chronic illness. I just don't think it's a productive use of my energy to think of battling myself or anything else. Then I watched the movie The Way of the Peaceful Warrior, which is based on a true story starring Nick Nolte, Scott Mechlowicz, and Amy Smart. And I started to re-think the word warrior.

From the book:

Way of the Peaceful Warrior: A Book That Changes Lives by Dan Millman

Warriors, warriors we call ourselves.
We fight for splendid virtue, for high endeavor, for sublime wisdom,
therefore we call ourselves warriors.
~Aunguttara Nikaya

From the interview with Dan Millman, "Peaceful Warrior - From Book to Screen" page 209, at the end of the Peaceful Warrior book:

Q: Why is the book called Peaceful Warrior? It's about a gymnast, not a soldier or martial artist. What does it mean to be a Peaceful Warrior?

A: Socrates once told me "I call myself a warrior - a peaceful warrior - because the real battles we face are inside us." This is also my experience. The way I teach, expressed through my books and now the film, is that we must learn to live with both courage and love, because it takes courage to live and to love in this world.

On these terms I can call myself a Peaceful Warrior in my inner battle against fibromyalgia, degenerative disc disease, etc.

Whipping Post - fibromyalgia version

2010-11-05T03:05:00.001-04:00

The other day I wrote about FM being a whipping post for the media among others (TV show Bones uses fibro as an excuse for murder). After writing that post I was inspired to listen to the song Whipping Post by the Allman Brothers Band (take your choice of the 5 minute version or the 22 minute version) and to check out the lyrics (including a nine minute video of the band, before Duane Allman died).

Ah, the music of my youth. But back to the here and now. I was then inspired to rewrite these classic Southern Rock lyrics. Here's the result.

I been run down, I been lied to,
I don't know why I let that mean doctor make me a fool.
He took all my money, and my new car.
Now they’re usin’ all kinds of media
They’re makin’ fools of us ever’whar.

Sometimes I feel, sometimes I feel,
Like I been tied to the whipping post,
Tied to the whipping post,
Tied to the whipping post,
Good lord, I feel like I'm dyin'.

Some friends tell me, that I’m such a fool,
And I have to stand by and take it, all for havin’ Fibro.
Drown myself in sorrow, and I look at what they’ve done.
But nothin' seems to change, the bad times stay the same,
And I can't run.

Sometimes I feel, sometimes I feel,
Like I been tied to the whipping post
Tied to the whipping post,
Tied to the whipping post,
Good lord, I feel like I'm dyin'.

Sometimes I feel, sometimes I feel,
Like I been tied to the whipping post
Tied to the whipping post,
Tied to the whipping post,
Good lord, I feel like I'm dyin'.

The Allman Brothers Band at Filmore East

My Social Security Disability Case

2010-11-04T03:05:00.001-04:00

I've decided to blog about my Social Security Disability case. I've held off on doing this because of the potentially detrimental effect it could have on my job search, if I'm ever able to work again. The reasons I've made the decision to write about my SSD experiences are:

Because people seem interested in the process and it might help others with their own SSD cases. (See Dot Gets SSD for Fibromyalgia and the comments, from Fibro World.)
To make pubic some interesting statistics about the approve and denial rates of some Administrative Law Judges in Georgia.

I'm going to start with what is currently almost the end of the story. The Administrative Law Judge's decision in my case was Fully Unfavorable. That means no way, no how.

I'm filing an appeal to the hearing decision, with a different lawyer than the one who went to the hearing with me.

I was reading a blog post by my previous lawyer, Lack of Consistency Among Social Security Judges a Problem that tells about a "...project undertaken by a newspaper in Oregon to evaluate the "approve rate" of the Administrative Law Judges presiding over hearings in that State. It turns out that one of these Oregon judges approves only 11% of the cases he hears, whereas the average approval rate for judges in Oregon is just over 50%."

I started wondering if there were any statistics like they used in the Oregon project available on Georgia judges. I had almost given up searching when I found the ALJ Disposition Data on the Social Security Administration's own website.

So I checked out my judge's stats in the ALJ Disposition Data and continued to wonder how he could have decided against a person (me) with two reputable M.D.s saying she can't work, literally reams of medical records and a full-time work history going back 25 years including a college degree. I acknowledge it might not that clear cut looking at the facts from his perspective, but there was definitely enough for a reasonable person to decide in my favor. More on proof of that later.

It wasn't until a couple of nights ago when I was pondering this information again that I thought about the judge who had decided three of my friends' cases at hearing at around the same time as my hearing. I know these ladies from our FM support group, and I knew they all had the same judge and I knew his name. So I looked up his stats on the ALJ Disposition Data website.

Then I made a spreadsheet and figured the percentages on each judge's data, below. Click "Full Screen" at the top of the spreadsheet to make it larger. Click "Esc" on your keyboard to come back to this page.

ALJ Disposition Data

Pretty startling, huh? This is just two judges from Georgia; I'm going to pick out the rest of the Georgia judges from the ALJ Disposition Data and put them in the spreadsheet. Then I'll have a more accurate comparison. But still, it just doesn't seem fair that the luck of the draw should have everything to do with winning or losing a disability hearing. In fact, I think it's ridiculous.

As you can see, my judge is pretty slow compared to Judge Washington. That's because he has made twice as many Partially Unfavorable decisions as Judge Washington on less than half the total decisions, and where Judge Lewis has 39% denials, Judge Washington only has 8%. It takes a long time to go through an entire case file, and then to write a denial or partially favorable decision. In my case I think he should have gone with the two doctors opinions. Instead he chose to tear through my entire file (in which all of my main doctor's notes are handwritten and completely illegible to me), and make a medical decision completely contradicting my doctors' opinions. This guy studied law, not medicine.

OK, I meant this to be a short intro to my experiences so I'll stop for now.

Lady Justice

TV show Bones uses fibro as an excuse for murder

2010-11-03T03:04:00.000-04:00

Bones is one of my favorite TV shows; I'll just be glad when fibromyalgia is replaced as the whipping post by some other new and little known about disease. Unfortunately for the new disease, that WILL happen!

We're getting a lot of TV time from the pharmaceutical companies, but I dream of the day when people with FM will be guests on the talk shows, the news shows, something positive about us will be portrayed on the entertainment shows and no one anywhere will dare to make a mockery of such a horrible disease. (Yes, I know they say it isn't a disease. It's just a matter of time. Mark my words.)

So I watched an episode of Bones awhile ago and the murderer was a teacher who, when she was caught said she had FM and that she had pushed a guy into a poisonous fish tank because he had taken a lot of her money for a false cure to FM; then she said killing the guy must have cured her FM because she hadn't felt any pain since!

Puh-leeeez!

Here's the text from a transcript of the show:

"The Predator in the Pool"
Episode 5x18
Airdate: April 22, 2010

BOOTH: You said you didn't know who Jazz Gunn was.

GRACE: I went to nine of his seminars. I have fibromyalgia and that bastard convinced me that if I just faced my fears, that magically all of this pain would just disappear. He lied.

BOOTH: So you brought a group of fourth graders along as an alibi for murder?

GRACE: No, it was a coincidence. He took me back to see this poisonous fish. "Come face your fears," he said. Last thing he should have said to me right then. I'll tell you what, though. He might have been on to something, that bastard. Because ever since I shoved his lying face into that poisonous fish, I haven't felt any pain.

Please ask Facebook to remove the "Fibromyalgia is BULLSHIT" page

2010-11-02T00:01:00.004-04:00

Here's the Fibromyalgia is BULLSHIT Facebook page. It has a whopping 113 people who "like" it.

Those of us who are active on Facebook know that there are many FB groups (over 500) and pages (407 as of the publication of this post) that advocate support, a cure, all kinds of positive things, for FM. There are tens of thousands of people who belong to these groups or who "like" these pages.

In spite of the fact that we outnumber this dinky little page by far, I think it needs to be removed because it contains hate speech and it targets people with a disease, people who often also have a disability. Would FB tolerate a hate page called "Cancer is BULLSHIT?" It's hard to even wrap your mind around the concept, isn't it?

If you feel so called, please join me in asking FB to remove this page.

Here are easy instructions:

Go to the page by clicking here.
Go to the bottom of the sidebar on the left side of the page, where it says "Report Page" and click.
Under “This Appears to Be,” click "Contains hate speech or attacks an individual."
Under “Choose a Type,” click “Targets People With a Disability or Disease.”

Pages can now be reported multiple times, so repeat the above to your heart’s content.

Please spread the word to your family, friends, and acquaintances.

THANK YOU! ☺

November is NaBloPoMo - National Blog Posting Month

2010-11-01T15:58:00.000-04:00

And I've decided on the spur of the moment to participate. Last time I tried this I lasted a week. This time I'm going the try really hard to write faster and to shorten my posts by breaking them up into multiple posts. So we'll see how it goes.

The FDA rejected Sodium Oxybate for the treatment of Fibromyalgia

2010-10-30T00:27:00.001-04:00

From the National FM Association: Update on FDA rejection of Sodium Oxybate for treatment of fibromyalgia.

Here's a link to the first post I did on the topic of Sodium Oxybate for FM: The FDA is considering approval of another new drug for Fibromyalgia that could help with sleep, fatigue and pain.

Sodium Oxybate has been rejected by the FDA so I guess that's that. Some day someone will figure out why I get NO stage 3 or 4 Delta sleep at all, ever (see Finally - sleep study results!), or they'll come up with a drug to treat the problem safely. Until then I wait patiently, if also constantly exhausted no matter how much apparent sleep I get.

I did get a nice response from the FDA to my letter of support for Sodium Oxybate for the treatment of fibromyalgia. It's below. The response also contains a link to a transcript of the meeting where info was presented and discussed by a panel, and to additional meeting materials. On this web page the August 20, 2010 Meeting of the Arthritis Drugs Advisory Committee section is the one on Sodium Oxybate/Xyrem. This site includes a link to a transcript of the meeting (304 pages), and links to slides for the meeting:

FDA (129 pages)

FDA Core Presentation, Sodium Oxybate Oral Solution, for the August 20, 2010 Joint Meeting of the Arthritis Advisory Committee and the Drug Safety and Risk Management Advisory Committee (PDF – 1.5MB)

Jazz Pharmaceuticals, Inc (152 pages)

Jazz Core Presentation, Sodium Oxybate Oral Solution, for the August 20, 2010 Joint Meeting of the Arthritis Advisory Committee and the Drug Safety and Risk Management Advisory Committee (PDF – 2.5MB)

There is literally reams of information there.

The FDA's response to my letter:

to Sherril Johnson

date Fri, Oct 8, 2010 at 4:50 PM

Subject RE: Letter of Support for Sodium Oxybate for the Treatment of Fibromyalgia

Dear Ms. Johnson,

The mission of FDA’s Center for Drug Evaluation and Research is to ensure that drugs marketed in this country are safe and effective.

FDA recognizes fibromyalgia to be a devastating disease and we empathize with the sufferers of this disease.

As part of this review process FDA held an Advisory Committee meeting on August 20, 2010, to discuss the new drug application (NDA) 22-531 for Sodium Oxybate, and the safety and efficacy findings in the fibromyalgia population. The Advisory Committee provided FDA with independent opinions and recommendations which were advisory in nature and not binding.

We realize that Fibromyalgia is a devastating and debilitating disease with limited treatment options. FDA takes seriously its obligation to carefully weigh all the scientific data and research, including evaluating the risks and benefits for patients, when deciding whether a product should be labeled for a particular use. No final decision has been made regarding the approval for marketing of this product.

We encourage you to visit the FDA Advisory Committee web site for a transcript of the meeting and additional meeting material at: http://www.fda.gov/AdvisoryCommittees/CommitteesMeetingMaterials/Drugs/ArthritisDrugsAdvisoryCommittee/ucm203434.htm

Thank you for making your opinions known to the Agency.

Sincerely,
CAO
Division of Drug Information
Center for Drug Evaluation and Research
Food and Drug Administration

For up-to-date drug information, follow the FDA's Division of Drug Information on Twitter at FDA_Drug_Info

This communication is consistent with 21 CFR 10.85 (k) and constitutes an informal communication that represents our best judgment at this time but does not constitute an advisory opinion, does not necessarily represent the formal position of FDA, and does not bind or otherwise obligate or commit the agency to the views expressed.

The FDA is considering approval of another new drug for Fibromyalgia that could help with sleep, fatigue and pain

2010-10-06T12:25:00.287-04:00

Mixed media Sleeping Beauty, originally uploaded by melanie_hughes*.

The NFA is asking people with Fibromyalgia to email or fax the FDA a letter of support for approval of a new drug for FM. The NFA has even provided a basic letter for us to use: there's one for people with FM who have taken the drug, sodium oxybate (generic name) or Xyrem (brand name), and another letter for people with FM who support approval of sodium oxybate but have not actually taken it themselves. Go here to see my letter. The NFA says on October 11 the next important step in the process for FDA approval of sodium oxybate will take place, so be sure to get your letters in before that date.

I've done a lot of research on this medication, before and after I tried it. If you are wondering some of the same things I was, maybe the information and links below will help you.

An FDA panel, or advisory committee has actually already said no to sodium oxybate. I think the actual vote is on October 11, but it's hard to tell exactly what's happening then from any of the sources I've found.

Why does politics have to be so complicated? I really don't think it does have to be. It's very frustrating to me.

Clinical Trial of Sodium Oxybate Results

The Fibromyalgia Network provides us with the results of the 2004-2005 clinical trials (of 188 people, an average of 35% had improvement in sleep and pain with reduction in fatigue), but at this time us regular people apparently don't get to know the results of the Stage III clinical trials which involved testing 1,050 people in 2008-2009. In any case, I can't find where these results are published anywhere.

35% isn't a very high number. It's in the same efficacy range as the other three drugs that are FDA approved for FM. This number isn't much better than that of a placebo; but if I was one of the lucky few that are helped by this medicine (like I was with Savella - except for that pesky tachycardia) I would surely put up with all the rigmarole involved in taking it (see below under "Current Prescription Procedure").

The Controversy

For those who aren't aware, sodium oxybate is also known as Gamma-hydroxybutyrate, or GHB, a.k.a. the date rape drug. No wonder they changed the name to Xyrem to market it this time around.

This article from about.com's Teen Advice section, Date rape drugs explained and demystified, lays the cold, hard truth on the line:

(Referring to Rohypnol, Gamma Hydroxy Butyrate (GHB) and Ketamine Hydrochloride) There are many factors that make these drugs desirable to sexual predators. The drugs are virtually undetectable; they are tasteless, odorless and colorless. All traces of the drugs will leave the body within 72 hours of ingestion and are not found in any routine toxicology screen or blood test - doctors and police have to be looking specifically for them and they have to look quickly! Date rape drugs are easily slipped into drinks and food and are very fast acting. They render the victim unconscious but responsive with little or no memory of what happens while the drug is active in their system. The drugs also make the victim act without inhibition, often in a sexual or physically affectionate way. Like most drugs, date rape drugs render a person incapable of thinking clearly or of making appropriate decisions. This makes for a very passive victim, one who is still able to play a role in what is happening but who will have no clear memory of what happened after-the-fact. Without any memory of events the victim is often unaware that they have even been raped, and if they are aware or have suspicions they make very poor witnesses.

Yes, this makes me very uncomfortable. What if I was taking sodium oxybate and I had just taken my first or second nightly dose and a rapist came in my home and did his thing to me - and I acted like I was having a good time? I think that's why they have you take Xyrem in two doses per night; so you are never that deeply under it's influence. I know that the two nights I tried it, I was never that deeply asleep, but there were other circumstances for me so it's really impossible for me to have an accurate opinion. Read my personal story in my letter if you're interested in my brief experience with this medication.

In the TV shows where I've seen the effects of date rape drugs portrayed, the victims always think they've been asleep very deeply and they're hung over for some time afterward. This too would indicate a much higher dosage than what we're talking about for legitimate medicinal use.

The about.com site has a lot more information about these drugs:

Protecting Yourself from Date Rape Drugs

GHB

It can be easily made with common and readily available ingredients and novice chemistry skills and the recipe is easy to find.

For me, this is the deciding factor. Whether or not this medicine is legally available to people with Fibromyalgia, there are going to be creeps and rapists out there whipping it up in their basements for nefarious uses. So if it helps, we should have the right to choose this medicine as part of our treatment plan.

For the history of this drug, by all of its names go here.

The Current Prescription Procedure

I've never taken a med that has such a thorough safety program:

A number of measures have been put in place by Xyrem's manufacture to ensure that it is used safely and appropriately. Xyrem requires a prescription and can only be obtained through a restricted distribution program, called the "Xyrem Success Program". This restricted distribution program is required by the FDA as part of a Risk Management Program (RMP) to manage product safety and prevent abuse.^[19]
The program involves many risk management components, such as:

Physician education

Registration

Patient education

Detailed patient surveillance

The program includes a single centralized pharmacy with a toll-free number.
Initial dosages are set by the prescribing physician. Each bottle of Xyrem is shipped with a graduated syringe (measured in grams) and two dosing cups. Each night, the patient mixes two doses with 60ml of water (sometimes substituted with a calorie-free beverage to cover the unpleasant taste of the medication). The first dose is taken at bedtime, and the second is taken 2.5 to 4 hours later.
http://en.wikipedia.org/wiki/Xyrem#Safety

*Thanks for Melanie Hughes for the pretty picture of the sleeping lady.

Speak Out and Take This Survey on Invisible Illnesses and Hidden Disabilities

2010-09-29T23:12:00.001-04:00

Source: InvisibleIllnessWeek.com. I added the emphasis.

Laura Brydges, B.A.Sc., M.A., and Jennifer Martin, PhD, Industrial/Organizational Psychology have put together a survey about invisible disabilities and have asked those involved with National Invisible Chronic Illness Awareness Week to be involved!

These women bring their personal experiences of having disabilities together with more than 30 years of research and health communication expertise. They began a group last year on Facebook called “Hidden Disability” and now have launched an invisible illness and hidden disability survey that asks some very important questions about disability. It is a secure and confidential English-language survey that will give adults everywhere their chance to share their opinions on some new disability issues.

The survey is the result of advocacy efforts of two women who both have disabilities. They have funded this research through garage sales, and are relying on word-of-mouth for this survey to reach as many people world-wide as possible. So please forward this message onto all of your contacts, friends and family, and ask them to take part too.

The survey should only take 15 to 20 minutes to do.

It took me more like a half hour to take the survey. They have six proposed international symbols for Hidden Disability that you get to give your opinion on. I think it would be good to have an international symbol and a card or something to carry with me in case I needed to quickly prove that I am disabled.

Laura Brydges, B.A. Sc., M.A., has won Canadian awards as a journalist, health professional, and media researcher. Now retired due to injuries resulting from a car accident in 2005, she wants to turn her experiences with disability into something positive for others living with disabilities.

Jennifer Martin, PhD. Industrial/Organizational Psychology, brings more than 15 years of experience conducting research for publication, consulting in government and private industry, and teaching at various universities and colleges in the United States.

Blogging About Illness Update: Why we do it, and what's new about it

2010-09-14T20:18:00.003-04:00

"For the chronically ill, blogging is a powerful thing. We often feel isolated and invisible, but when we put ourselves out there in a blog, we suddenly have a voice, and we start to build a community. It does take a lot of energy, specially when you explore topics that are emotionally taxing, but the end result is worth it. I know I’m never alone in this, and I can help other people see that they’re not alone, either."
Adrienne Dwello of the FM and CFS Blog on about.com, from "My Fibro Story" on the National Fibromyalgia Association's Fibro Blog

In 2007 when I wrote about blogging about illness, my research was predominantly on writing about illness because I just couldn't find much information on blogging about it. In the paragraph above, Adreinne has wonderfully summed up how blogging about illness is different from writing about it. She's really good at that, summing things up. Blogging about illness is all about community and the feeling that we're helping others.

Blogging about illness has really come a long way in three years.

For one thing, blogs are now being turned into books. Some call them "blooks." Example: Know Your Numbers, Outlive Your Diabetes by Amy Tendrich of Diabetes Mine. Or sometimes blogs are created to go along with a book release. I can't find an illness example where this has happened, so I'll use The Happiness Project because I think it's such a great and generous blog/website. Gretchen Rubin wrote the book and has a blog about it too.

Another new development is that there are "Blog Carnivals" for different topics. There are several blog carnivals on chronic illness/pain topics. Entering a post in a blog carnival is a good way to get exposure for your blog, and a way to kind of force yourself to write on a schedule. In the interest of full disclosure, I have never entered a blog carnival. I hope that one day I will do that... I think I've been writing long enough now that I'm about ready to try writing on a short time deadline like the ones that are usually involved in blog carnivals (to me, two weeks is a short deadline). Some examples of blog carnivals: The How to Cope With Pain Pain Blog Carnival; Patients for a Moment Patient Centered Blog Carnival; and Chronic Babe.com's Blog Carnivals.

Speaking of ChronicBabe, did you know that Jenni Prokopy started that whole website as a little ol' blog? It's true:

I started ChronicBabe.com as a blog, a hobby – a way to share my experiences with other young women. When I was diagnosed, I felt alone and confused, and the online resources I found sucked, frankly, so my goal was to share my perspective with others like me so they wouldn’t feel as alone as I did. This came about after years of working with multiple doctors, and coming to a place of acceptance regarding my illness.

Interview with Loolwa Khazzoom of Dancing With Pain

Another change that's been happening with blogs is expressed very well by Susannah Fox of the e-patients.net blog in E-patients, Cyberchondriacs, and Why We Should stop Calling Names:

"The phenomenon of using the internet to gather and share health information is now mainstream."

Our illness blogs are part of this phenomenon.

You might be asking yourself 'What exactly is an e-patient?' Cyberchondriac is pretty self explanatory (cyber + hypochondriac).

In 1999, Tom Ferguson, MD, came up with the term “e-patient” to describe individuals who are equipped, enabled, empowered and engaged in their health and health care decisions. The internet is a force that has allowed us access to much more information to help us with the four E's.

I think that people who blog about their illness are usually at some stage in the journey toward becoming an e-patient. They are moving toward "using every aspect of empowerment, technology, and participatory medicine to beat the odds" of chronic illness, just like e-patient Dave did. They are also providing a lot of the content on their blogs that is being used to help others on their own journey toward becoming an e-patient.

E-patient Dave de Bronart's blog is the epitome of "e-patient-ness;" he beat advanced kidney cancer and has a new career helping to transforming health care by using some incredible and so far horribly underutilized resources: the patient and communication! Check him out when you have time.

Three years ago when I wrote about blogging about illness, I quoted Arthur W. Frank in Part 2: Why Do People Write About Their Illness, and in Part 3: The Benefits of Blogging About Your Illness. (Note: In 2007 I wrote strictly about people who were writing/blogging about their own illnesses. Another change in landscape of blogging about illness is that more people who are not the actual patient are doing it; an excellent example is Fibro World written by the mother/daughter, caregiver/patient team of Fibro Mom and Fibro Dot.)

Back to Arthur W. Frank. For some reason I imagined him to be a wizened old man, I guess because such wisdom emanates from his work. But he doesn't actually look that old. Or wizened!

In 2007 I wrote:

It has been said that from the era of the Internet a "new patient" would emerge, one who researched his or her ailments in the comfort of home, then challenged a doctor with the newly acquired knowledge. (From 'Sick blogs' help afflicted share news, seek comfort.) Dr. Frank and says that sick blogs and patient pages are evidence that that moment has arrived, a sign that the new patient has gained an unprecedented sense of empowerment from her online community. Empowerment is definitely a benefit.

Frank's book “The Wounded Storyteller” also identifies the voice we all need to access in the battle with life-threatening or life-altering illness. When we recognize this struggle as an opportunity for journey, we can also recognize the call to help others currently in the "trenches" of illness, to bring about their healing. I definitely feel called to write and those are two of the reasons why: it helps me to access “the voice” I need to battle illness; and for me the writing itself has turned out to be an opportunity to help others with invisible illness which has led to other opportunities to help that don’t involve writing, such as facilitating support groups.

As Arthur Frank wrote, quest narratives are about finding the insight that comes as illness is transformed into a means for the ill person to become someone new. I think the big picture of what's happening to me, and what I'm chronicling in my blog is somewhat of a quest narrative. I'm in the process of figuring out what my life is going to be since it can't be what I originally intended, due to the monkey wrench of chronic illness which life has thrown me. There's a metamorphosis happening here and I am only able to see it because my writing in my blog, and in my local FM support group newsletter before that, has helped me reflect on it and recognize it.

My blog has come a long way in three years. In 2010 I can add that my quest narrative, this blog The ICI Experience, has led me to a workable theory of the answer to the question 'Why me?' that most of us with illness ask ourselves. It's a big theory and it's leading me on to another journey. I've been pondering how to begin to tackle describing it on The ICIE. It's going to have to be another blog post or series, and technically it's going to be a whole different blog, but I think the concept of living downstream will serve as a good closing to this series and to the beginning of a new one.

Living downstream is a phrase used by environmentalists to make us aware of the impact our actions today have on our lives tomorrow.

This is The Parable of Living Downstream:

There was once a village overlooking a river.
The people who lived there were very kind.
These residents, according to parable, began noticing increasing numbers of drowning people caught in the river’s swift current. And so they went to work devising ever more elaborate technologies to resuscitate them.

So preoccupied were these heroic villagers with rescue and treatment that they never thought to look upstream to see who was pushing the victims in.

This film is a walk up that river. The river of human cancer.

~Sandra Steingraber

My theory is that that river holds a lot more illnesses than cancer. My new journey (and blog) will be walking up that river with Sandra Steingraber, and many others.

Quest narratives in fairy tales end with the hero finding what they're looking for or achieving their goal. Hey, it could happen!

The Flint River in Albany, GA by Steve Robinson

The Mechanics of Blogging About Illness: An Update

2010-09-12T02:16:00.007-04:00

This is part one of my post for Invisible Illness Awareness Week. It's an update to the series of blog posts I did for National Invisible Chronic Illness Awareness Week in 2007.

The three posts that I wrote in 2007 are all still pretty pertinent to the topic, but as I mentioned in my last blog post (links to the three 2007 posts are there), there's a lot more being written on blogging about illness now than there was three years ago. So I figured an update was in order. Plus Lisa Copen, founder of II Week, suggested it as a topic.

Part 1 of the 2007 series of posts was also about the mechanics of blogging. In 2007 I referred to Jakob Nielsen's Blog Usability: The Top Ten Design Mistakes. I still think it's an excellent resource, with one argument about item #10, "Having a Domain Name Owned by a Weblog Service." Nielsen says:

"Having a weblog address ending in blogspot.com, typepad.com, etc. will soon be the equivalent of having an @aol.com email address or a Geocities website: the mark of a naïve beginner who shouldn't be taken too seriously."

I wondered about this one three years ago, and now I'm sure it's just plain wrong. I know of plenty of excellent and even venerable blogs that use a blogging service.

In 2007 I didn't write about blog plagiarism at all, because I didn't know about it. If you care about your creative content it's a pretty big deal. The US government has written a law, the United States Digital Millennium Copyright Act of 1998 (DCMA). This law protects intellectual property online, among other things. When you publish a blog post, it becomes copyrighted without your having to do anything else. Unfortunately, you pretty much have to enforce the law yourself if your content is stolen.

Stealing content is becoming more and more common. In fact while I was researching for this post I ran a check on The ICIE through Copyscape and found that someone had stolen my entire last blog post and put it on their own blog word for word including pictures, with no attribution to me at all.

Next I used WHOIS to look up who the blog is registered to. It belongs to a Joseph Eisenberg, in Israel. My next step will be to contact him and ask him to remove my content from his site. Lorelle on WordPress even has a form letter I can use. If Jakob doesn't respond within a reasonable amount of time, there are many other steps I can take. All of which will use up time and energy that I sure don't have a surplus of! And I wonder about the fact that this person is in Israel, where U.S. laws don't apply...

Here are several other links to sites describing what to do if your content is stolen:

How to Protect Your Website's Copyright When Someone Steals Your Content at Time For Blogging

What to do When Someone Steals Your Blog's Content - Blog Plagiarism at ProBlogger

I hope I'm not scaring anyone away from blogging with all this talk about content theft and how to deal with it. I suppose I could look at it as imitation being the highest form of flattery. But I'm still going to pursue anyone who steals my content to the limits of the law. And more, if necessary. ProBlogger has some interesting ideas in the link mentioned above, and:

Hitting Content Spammers and Plagiarists Where It Hurts

A lot of people who blog about illness are actually sick and not able to sit at a desk. I blog from a recliner with a laptop tray. I found this tray at The Bed Tray Shoppe. It actually looks pretty ergonomic and useful.

You probably want to avoid any setup that looks like this:

The blood is draining down from her hands and it will have a very hard time going back up. Not good.

Come back next time for Part 2 of this series which will be about the more philosophical aspects of Blogging About Illness. The fun stuff.

National Invisible Chronic Illness Awareness Week 2010: Each One Can Reach One

2010-09-06T17:43:00.003-04:00

National Invisible Chronic Illness Awareness Week 2010
September 13-19

National Invisible Illness Awareness Week is upon us once again. I'm thankful for that, because I know that Lisa Copen, the lady behind it all, has had a rough year since II Week 2009 - check out her "outrigger splint;" and she doesn't even mention the flesh eating virus she had to beat after the surgery! The fact that the event is happening at all this year is a testament to her strength and resolve in this mission to increase awareness of invisible illness.

If you're a blogger and you want to participate with a blog post you can sign up at Bloggers Unite: National Invisible Chronic Illness Awareness Week 2010. And if you're not a blogger you can see all the blog posts for this event in one place there.

My blog topic for this year will be "Blogging About Your Illness: An Update," per Lisa's suggestion. In 2007 I was a participant in the II Week Virtual Conference, and Blogging About Your Illness was my topic. Three years ago researching this topic was hard going. There wasn't much information available, so after writing about the mechanics of blogging, I wrote about "writing about illness." Things have changed a lot in this respect; there's lots of info out there now on blogging as a specific form of writing about illness. And I'm going to tackle it in my next post!

In 2007 at the Virtual Conference I was ready to talk (actually that year we were chatting in writing, not talking) about The Mechanics of Blogging About Your Illness (Part 1), Why People Write About Their Illness (Part 2), and The Benefits of Blogging (writing) About Your Illness (Part 3). But people had so many questions about Part 1, The Mechanics of Blogging About Your Illness that all my time was used up answering them. So I put it all up as a three part blog post where it remains today for posterity.

Tune in for the "Blogging About Your Illness Update" on my next post.

This year the theme for II Week is "Each One Can Reach One." The idea is to spread the word via Post-It notes. That way even people who don't do computers can be reached. Lisa has an informative video about it, among lots of other goodies, on the II Week website at http://invisibleillnessweek.com/. Below is a slide show of notes that people are taking pictures of and sharing. My favorite so far is the one on the Epsom Salt shelf at the store. I have a shelf like this in my home; I can't abide being without my Epsom Salt!!!

There is also a free ebook of chronic illness tips available that looks totally cool - Chronic Illness Tips: 263 Ways To Do More Than Just Get By. You sign up for daily email updates on II Week in order to get the ebook, and so far the updates are excellent and something I'm going to use to keep up with all of the II Week happenings. There are A LOT of happenings and this will help keep me "in the loop."

The ebook has tips from a variety of Those Who Know - Lisa Copen, of course, Trish Robichaud, Jenni Prokopy, Maureen Pratt, Rosalind Joffe, Jennifer Saake and Jennifer Jaff, to name my favorites so far. I expect after reading the book and listening to the Virtual Conference I'll have a few more favorites! There are also a lot of links to even more info, in the ebook.

The topics range from relationships to career to faith to practical tips, and more. The faith focus in the eboook is on Christianity, but there is also an abundance of secular information if that's not your bag.

One quote from Lisa that really struck me:

I have had days where I have thought, “If one more person tells me to go have a cup of tea I am going to scream! Tea is not going to help, people! I am tired of tea! My illness is bigger than tea! Don’t you get it?” page 13

Yes Lisa, I totally get it.

Bloggers Unite for People with Disabilities: Accessible Blogs

2010-07-29T19:00:00.002-04:00

Well, I didn't make the 7/24/2010 deadline for this round of Bloggers Unite; I was going to find out how to make my blogs accessible to all. Silly me, I though this would be a no-big-deal kind of thing to do. Wrong.

I should really learn to research these things BEFORE I make commitments about doing them. I'm living and learning, and although I'm late for the event, I wanted to at least report back what I found out.

First I went to WAVE, a Web Accessibility Evaluation Tool that I found on the Blogger's Unite for People with Disabilities page, and plugged my blog's address in. That told me everything that was wrong with my blog regarding accessibility. And that's all. No clue as to how to fix it. Or if there are any clues, I'm too clueless to pick up on them.

So I went back to the Bloggers Unite for People with Disabilities page and put in this comment:

Any hints on how to make a site/blog 100% accessible?
16 days ago
by: sherrillynn
I'm going to try to make my blog (theiciexperience.blogspot.com) 100% accessible for the People First event. I have no idea how to do it and the Wave site that tells me some things about what's wrong with my blog (wave.webaim.org/) has no clues about what to do to fix it. I'm going to research this, but any helpful hints would be greatly appreciated.

Thank you!

I was pleased when the good folks at BlogCatalog responded within a couple of days:

14 days ago BlogCatalog wrote:
I am sure we can help you. Let me contact some people I know that I think will have some info for you and I'll post here when I get some replies.

A few days before the event deadline this comment was posted:

Questions about web accessibility
8 days ago
by: BlogCatalog
A few people have asked if there are resources that explain to bloggers how to fix problems a site evaluator may point out to them about their site. I asked blogger @GlendaWH if she had any suggestions and she responded:

Two great resources for web accessibility are the Web Accessibility Initiative - www.w3.org/WAI/, and WebAIM - www.webaim.org/.

However, I am finding that blog accessibility is different than web accessibility, even though the underlying principles are the same. Instead of a web team working together, with blogs, there's the platform, the theme, the plugins/widgets and the blogger. The average blogger can do only so much in terms of accessibility.

Hope this helps those of you who had questions and thanks Glenda for sharing your knowledge with me and the rest of the event.

So. For now, no accessibility for those of us with blogs using existing platforms (Blogger, WordPress, etc.) But I feel like progress has definitely been made in that this information is out there now for others to find.

It seems to me that the next thing to do is to make our desire to have accessible blogs clear to the platform providers. Are ya hearing' me, Blogger?

Bloggers Unite for People with Disabilities

2010-07-13T14:05:00.002-04:00

From the good folks at BlogCatalog, another great blogging event:

From the email I received notifying me of the event:

Dear Fellow Blogger,

As bloggers, you and I have the unprecedented ability to raise awareness about important issues by simply posting about them. When we act on behalf of a cause and then write about it, we dramatically increase the positive impact we can have on the world.

Today, I am asking you to take action on behalf of all the people around the world living with a disability. Just like those of us who are able-bodied, they simply want to live a happy and productive life. Help us eliminate the barriers to participation and the prejudices they face every day by taking a simple action. You can donate to an organization that supports people with disabilities, sign an online petition asking for equal access, make your blog 100% accessible. Then write about it. Tell others how important it is to make all the opportunities our world has to offer accessible to everyone. Tell them how easy it is to get involved and how good it feels to help others.

On July 24, 2010, BloggersUnite is asking bloggers from all around the world to unite in support of people with disabilities. Please join us! http://www.bloggersunite.org/event/people-first-empowering-people-with-disabilities

Thanks for reading. Have a great day.

Sincerely,

Jason Teitelman

I'm going to try figure out how to make my blog 100% accessible, then I'll write about that, among other things on my mind regarding this issue, on the 24th of July. According to this Web Accessability Tool I found in the comments section of the Bloggers Unite: People First page, I have my work cut out for me!

Happy 3rd birthday to the ICIE!, and another new venture begins today

2010-05-19T01:11:00.059-04:00

Three years ago today I started this blog; and today I'm starting another new venture as a Consultant with Ava Anderson Non-Toxic. I'll write more about it soon, but for now here's a link to my new AANT website:

http://www.avaandersonnontoxic.com/sherriljohnson

I hope that if you would like to order anything from the only company in the world whose products all score a big, fat zero on the Environmental Working Group's Campaign for Safe Cosmetics "Skin Deep" Cosmetic Safety Database , that you will order from my page. Thank you!

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