Showing posts from 2011

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

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 
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…

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

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 hereWego 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 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 li…

Long time no blog post...

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.

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

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 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 le…

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

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 ( 
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'…

Bloggers Unite for Fibromyalgia Awareness Day May 12, 2011

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 an…

The Social Security Administration does not like negative publicity

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 …