Monday, February 25, 2008

Chronic Monday: Validation, A Poem

I think this poem is quite good. It is reprinted with permission of the author, who also has a book out, Call for Soulwork (CFS, get it?), and a website by the same name.

But first - something caused me to take my desktop computer down yesterday, which I've been meaning to do for months now in order to move the hard drive and make more space on the desk. Soon after I got it all unplugged and moved to the floor I realized what an incredible mess the cords were, and that I was going to have to take the rest of the office down (Mom's computer, the printer, various devices that enable us to surf the net at the speed of sound and to network our computers) in order to put my hard drive where I want it. No, too late to put it back the way it was. I unplugged everything and tried to put the cords where they will need to be, right before I had the revelation about what it's going to take to put it right. Now it will be just as much work to put it back as it will to go ahead and move it.

That whole digression was leading up to my excuse for not getting the sleep study up today. I finally got it scanned correctly, but of course the scan file is on the desktop computer and I can't get to it right now. (Sorry Aviva!) I'll try really hard to get it done for next week.

In the meantime, I love this poem by Gretchen Brooks Nassar. It says so many things I'm thinking, so perfectly.

A Cry For Validation

Gretchen Brooks Nassar

I Cry for validation,
I just need validation.
Agree with me, damn it!
I'm not okay.
Can't you see what's happening?
mucous in mouth, white coated tongue,
sleepless, wakeful nights...
None of this is alarming?

You notice none of it.
You question my motives
for illness
like CFS is some kind of criminal behavior.
But it's an invisible crime.

I sleep weird hours: no work, no routine
What you see are behavioral
oddities, and not facts of my physical and emotional

You judge me,
I am wrong not to work
CFS a mere excuse
Well, ex---cuse me!
No one chooses illness
well...not consciously.

My illness is real, physical
an uncomfortable, uninvited entity.

Yes, I am befriending it.
Yes, CFS has changed my life.
I let it in now and it's not my enemy.
Sometimes I pretend it isn't a part of me, but
CFS and I are real!
Can't you see?
Validation I seek.
I am not crazy.

strange molecules dance,
and destroy
my brain and emotions
I feel temporarily invaded.

Inexplicable rage; crazed
lost in the parking lot;
dizzy disorientation.
Here I am seemingly overpowered
by miniscule chemicals.

You don't see them,
only I feel them.
Trust me, I know what I am feeling,
Trust me,
am I crazy?
Trust the raging banshee?

You don't see much,
even my struggles with disorientation and
debilitating fatigue.
You don't see me; only your memories, only your
skewed perceptions of my reality
are what you see.

I need to be heard.
I need to be understood.
I need to have someone say:
"Yes, your feelings are real, your symptoms are physiological
Yes, you have CFS.
I'm sorry you have CFS.
Can I help?
You have CFS,
what's that like?"

takes the pain of your judgment and denial--- all away.

I can forgive you.
I do forgive you.

You are blind, afraid to open your eyes,
denial freed you from responsibility, from feeling the need to do anything.

You are free to judge.
I'll find my peace, and I'll find others who believe
in me
and the reality of
my disease.

I'll find my peace.

Copyright 2004, Gretchen Brooks Nassar

Photo by splorp on flickr.com

Wednesday, February 20, 2008

Oh. Well. It's been decided; the NY Times article on Fibromyalga was a "balanced presentation." According to who? The NY Times? Can they do that?

Apparently the NY Times CAN review it's own controversial article and decide it was indeed fair. At least they put this one on the OPINION page!

The Doctors Are In. The Jury Is Out.

by Clark Hoyt, NYT Public Editor and Readers' Representative

"The public editor serves as the readers' representative. His opinions and conclusions are his own. His column appears at least twice monthly in this section."

More drivel from the NYT. At least this one isn't (very) sarcastic.

He's supposed to be the "readers' representative," huh? I'd be willing to bet that the readers he has heard from about the original NY Times article on Fibromyalgia were of the opinion that the article was pretty far away from being a "balanced presentation." So what readers is he representing, anyway?

He quotes one reader and pulls the same stunt Berenson did by placing quotes around one word of Lynn Mantelleana's statement; thereby questioning the credibility of what she is saying:

“I am outraged that a reputable publication such as yours would publish such a nonsensical article about fibromyalgia,” wrote Joanne Nuckton of Tucson, who was angry that anyone would doubt her constant pain, inability to concentrate and "profound" exhaustion. “I request that you publish an article which states a different point of view,” she said.

Monday, February 18, 2008

Chronic Monday: Sleep (Not!) - Some practical help in overcoming sleep disorders

I have the report of my sleep study and I've had the appointment with the rheumy who ordered it. Finally. I'm going to put it all online soon. I think you will find it very interesting.

You just have to laugh about it sometimes:

What do you get if you cross an insomniac agnostic with someone who has dyslexia?

A person who stays up at night wondering if there is a dog.

Made me laugh.

I found Shara Rendell-Smock's website, Go To Health! (Because Life's Too Short...),

Shara Rendell-Smock, author
because she used the same book I'm using, No More Sleepless Nights, by Dr. Peter Hauri of the Mayo Clinic. This book and the companion Workbook seem to be the Bible of sleep for the layperson.

I got them both, used and in excellent condition from Barnes and Noble for $5.88 each, including postage. Shara goes through all the common facets of sleep hygiene, and she put the Sleep Log from the first edition of the book online. I plan to do an updated Sleep Log, and will post it as soon as I finish it.

Here are the links to Shara's posts:

Practical Ways to Overcome Sleep Disorders, Part 1

Part 2

Part 3

Part 4

Link to Sleep Log - it's an Excel spread sheet.

Wishing you restful sleep and sweet dreams!

Saturday, February 16, 2008

'Blog Roll 100' Chronic Illness Blogs

I am flattered and honored to be included with such talented and creative people as are in the 'Blog Roll 100' Chronic Illness Blogs. Thank you, Diane!

Thursday, February 14, 2008

Silent No More: I support our troops, but I am against the war in Iraq.

I've been called to action by my church. If I was able to go to the Interfaith Peace Witness in Washington D.C. on March 7, I would. In leiu of that I will stop enabling the war with my own silence.
“A time comes when silence is betrayal, and that time has come for us.”

Dr. Martin Luther King, Jr.

Olive Branch Interfaith Video
Posted February 13th, 2008 by stan

I speak out now for these Principals of the Olive Branch Interfaith Peace Project:

Our principles

Posted January 25th, 2008 by OBIPP

1. End the U.S. war and occupation of Iraq and support peace with Iran.

2. Support our troops.

3. Support an Iraqi-led peace process.

4. Say NO to torture.

5. Say YES to justice.

Wednesday, February 13, 2008

Amy Tendrich, Diabestes Mine blogger makes the Big Time: Newsweek!

Yay Amy! From the Newsweek intro:
A Healing Blog

A shocking diagnosis of type 1 diabetes transformed my life. But, using the Internet, I turned it into a business—and formed a new community of friends.
By Amy Tenderich | Newsweek Web Exclusive
Jan 25, 2008 | Updated: 3:58 p.m. ET Jan 25, 2008

Monday, February 11, 2008

Chronic Monday: Practicing spirituality through illness, and a bit of humor

Spirituality and Practice is offering an e-course that looks really good, "Practicing Spirituality during Illness," from March 24 - May 2, 2008. Subscribers to the course will receive an email on each of the 40 days of the course:
...each with a passage from the wisdom of writers who have contributed greatly to a spiritual understanding of illness, teachers such as Rachel Naomi Remen, Ram Dass, Jean Shinoda Bolen, Kat Duff, and Mary C. Earle. Each email will also suggest a simple way you can incorporate the lesson into your daily life.

Subscribers will also have access to a private Practice Circle, which is bound to be an important part of this experience. In this user-friendly online forum, you will be able to interact with people from all over the world, sharing your own healing stories, the lessons of your illnesses, and the blessings of caregiving. We'll also compare notes on what we've learned from the daily practices in the course, thus grounding the content in our own lives (and bodies). Sharing our experiences and listening to others talk about theirs is an important part of the healing journey.

Offered through Spirituality and Practice Resources for Spiritual Journeys. The course will be led by Frederic and Mary Ann Brussat themselves. The cost is $19.95.

If I can get that voice recognition software running that I bought like six months ago, I might take this course. Although if it is geared mostly toward people with life-threatening illness, in my experience it doesn't translate the same to people with chronic illness who are stuck here to deal with it until... you know.

And on that note, high time for a little humor. This video is several minutes long; watch it when you have time for a good belly laugh. Oh c'mon, you know it's a fact that laugher is good medicine!

Mr. Bean Goes Swimming

Wednesday, February 6, 2008

"Lipstick Jungle": The book made me wonder (and grieve over) what my career might have been, if not for chronic illness... the TV series starts 2/7.

I just finished the book... and now I find out it's going to be a television series starring these three lovely ladies. Yes, that is Brooke Sheilds.

"SERIES PREMIERE tomorrow, Thursday February 7th 10/9c - "Pilot" - Movie Exec Wendy Healy, Editor-in-Chief Nico Reilly, and Fashion Designer Victory Ford are modern New York career women supporting each other through triumphs and tears that are all part of making it in the Big Apple." See the video clip at the end of this post.

I think the book was great chick lit. I'm looking forward to the series.


From the book:
"Men are just frightened little people with penises attached."
This from Wendy, in her pep talk to Nico when Nico was having second thoughts about the wisdom of getting her boss, Mike, fired. The boss cried, then he called Nico a bitch and Viktor's (Mike's boss') "little hand maiden."Nico didn't mind being called a bitch. That pretty much came with the territory of being a women in the man's world of upper management. She was much more bothered by the "little hand maiden" comment. You'll need to read the book to see her reasoning on that one...

I thought I was pretty much past wondering what might have been regarding my career. But I had an epiphany towards the end of the book. I was listening to the book and driving, and one thought led to another. One thought being: During the part where Nico has to fire her own boss so she can take his job, she likens the experience to having a child; incredibly difficult during the event, totally wiped out afterward, but the result was she had a great job/child and the knowledge that neither project would get easier.

The other thoughts this led to:
  1. I'll never know what I could have accomplished professionally, because at the age of 50 I am fighting for my social security disability application to be approved, having lived with chronic illness for the duration of my professional life, from my very first job at Woolworth's at the age of 16. (Endometriosis from the beginning of my cycle.) Afterthought: When I look at it like this, I did OK considering. I made middle management.
  2. I'll never know what it would have been like to have and raise a child.
I really thought I had dealt with these issues. Guess it's the old onion skin analogy. I keep dealing with them, but on increasingly deeper levels, peeling the skin of the onion ever deeper.

RE: Having a child, I've thought we're both probably better off (me, and the unborn child), considering what my life has been like. Failed marriage, inability to support myself because of illness, etc. etc. etc. But still I wonder what it would have been like...

So if you like chick lit, I highly recommend this book. The jury's still out on the series...

Hey, wouldn't it be great to see a female character with ICI on a TV series?

Monday, February 4, 2008

Chronic Monday: Cool sites I've found as a result of the NY Times Article on Fibromyalgia

I know I said last week that I would let this NYT article thing go, but I can't. It's just not time yet. I will lighten up, though. This post has only good things that I've come across in my research of what's being written about "The Article." All you peeps who have some other CI than Fibromyalgia, I hope you'll bear with me here. I mean, try to imagine what it would be like if an institution like the NYT were writing these kinds of things about your illness...

First up is Daily Strength. I think I'm really going to use this site. I've already made some friends in the FM group (one of whom is getting a letter writing campaign started on The Article - more to come on that), and they have this Goal Setting thing that you can use to track your progress toward achieving that goal. Your friends on the site can send encouragement your way, and you can even send email to others telling them of your goal, or put a link to it on your blog like this:

DailyStrength - Free Online Support Groups

Click here to go to the Fibromyalgia group on Daily Strength.

Or click here to visit the main site: DailyStrength - Free Online Support Groups.

In their own words:
"We offer online peer support groups focusing on over 500 life challenges of all types. We provide the tools and a safe environment for people to get the support they need from the people who understand what they're going through the best: people who share their challenge, a care giver of someone living with the challenge, or a medical professional. We've received really amazing feedback that our communities provide an important aspect of our Members' healing and recovery."

Then there's the FM group on eons (Eons, Lovin' Life on the Flip Side...), the Fibromyalgia Support Connection. I was already a member of eons before The Article, but I found the FM Networks's response from a link here. So I introduced myself and started making friends. The Site Manager is working on a project, a book.
The purpose of the book "A Photographic Journal of Fibromyalgia: Making it Visible" is to make it "Visible" through the art of photography and the personal journal entries of those photographed entrants.
Join the group to get more info and to submit an application to be in the book.

In their own words:
"What Is Eons™?
Boom. Boom. Boom. Have you heard it? It’s the beat of our generation of boomers—many of us at Eons included—who are lovin’ life on the flip side. Eons.com is the online community for “boom-ers,” those of us born between 1946 and 1964 and beyond, who want to learn and do more to make the most of every stage of life. Our community is the place for spirited boom-ers to explore passions and interests, keep in touch with friends and family, connect with interesting people to share life experiences, and most of all—have fun!"

Eons has this LifePath thing where you can literally lay out the path your life has taken so far, and project where you would like for it to go from here. Hard to describe. Guess you'll just have to go there and see for yourself.

And last but not least is the Fibromyalgia... Hope & Healing group on Care2 Make a Difference. This group has a ways to go on building the site, but I've not seen anything like it anywhere else.
This group is about Fibromyalgia; discussing its symptoms and remedies. We seek Natural rather than Pharmaceutical remedies in our path to healing. We encourage you all to share your experiences as we band together in this fight against Fibromyalgia!
(emphasis added by me.)

Regarding the Care2 site in general, in their own words:
Discover, share, take action! green living, health, human rights, and more...


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