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Thursday, November 11, 2010

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

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.

Sunday, November 7, 2010

Merton's Prayer for Peace

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?'

Saturday, November 6, 2010

Peaceful Warrior

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.


Friday, November 5, 2010

Whipping Post - fibromyalgia version

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



Thursday, November 4, 2010

My Social Security Disability Case

12/17/13:  Updated all links.  Dot & her Fibro Mom's blog has been gone for years now.  They have a Facebook page but nothing has been posted there since 2011.  I hope they are doing so much better that they don't have time for blogging about illness!  

2/29/12 Update:  The Fibro World Blog seems to be offline for now.  I'm leaving the links in the hope that they will be back.  That was really a great blog and I hope Fibro Dot and her Fibro Mom are OK. 

I never got around to doing all of the Georgia lawyers like I said I was going to in this post.  Oh well. 
 

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:
  1. 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.)  I can't find anything that's been posted by Dot or her mom since 2011.  Both of these links are dead.
  2. 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 Spread Sheet- Click the link and download the .pdf  of the comparisons of the judges' 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.

Wednesday, November 3, 2010

TV show Bones uses fibro as an excuse for murder

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.

Tuesday, November 2, 2010

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

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:
  1. Go to the page by clicking here.
  2. Go to the bottom of the sidebar on the left side of the page, where it says "Report Page" and click.
  3. Under “This Appears to Be,” click "Contains hate speech or attacks an individual."
  4. 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! ☺

    Monday, November 1, 2010

    November is NaBloPoMo - National Blog Posting Month

    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.

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    ©2010 The ICI Experience, Owner: Sherril Johnson All rights reserved.