Tuesday, June 24, 2014

Monday, June 9, 2014

Fibromyalgia Study needs participants: Anti Inflammation Diet

Hi All,

I'm participating in this study and I told Megan Fulsom that I know some people with FM (haha) and I would spread the word around that she's looking for participants. Megan is the person who is doing the study to complete her Master's thesis, and thereby her Masters in Dietetics at Indiana State U.

Megan is no stranger to multiple chronic illesses; she also has Fibromyalgia.  If you can, please give her a hand in completing her study.  Life is giving her a hard time of it.
When her study is completed it will be the only one of its kind dealing with FM and whether an anti inflammation diet helps or not. 

 Here's the link to her FB Advertisement:  https://www.facebook.com/sherrillynn/posts/10154258273365074.

Sufferer vs.Survivor Mentality

I noticed this as soon as I started reading Endo and Pelvic Pain websites and blogs, a few months after these new symptoms (yes, I'm going to write all about it; I just need to get into the swing of blogging again before jumping into the deep end) started in September of 2012:  Many of the people who write about these topics call themselves "sufferers."

I started being diagnosed with ICIs  in 1989 (Endo, Fibro and multiple food allergies that year) and I quickly learned that I preferred to refer to myself and others as survivors or persons with chronic illness X.  Even referring to myself as a fibromyalgiac, for instance, tends to give the illness a feeling of power over me.  None of the ICIs I have define ME, so I don't use terms like that either.   Sufferer connotes a victim mentality to me.  It's OK to wallow in the pool of being a victim for awhile, but I don't think anyone will get out of that sucky, I-feel-sorry-for-me-so-you-should too place unless we move on to thinking of ourselves in a more positive light.  Even if the word sufferer doesn't mean the same thing to me as it does to you, it's probable that it does have negative connotations to anyone you say it to (see definition two paragraphs down).

I've been thinking about this topic for quite awhile, but it was this post I got in my email today that inspired me to write about it:   Being A Survivor Is A Choice. by DanLrene on Dare to Dream blog.  Now that lady is a SURVIVOR. 

Butterflies have had a special meaning for me for a long time, so I'm glad to find Dr. Dave's sites about butterflies and positivity.

Unexpected help with this blog post came from the dictionary.com definition of sufferer:
Usage:  It is better to avoid using the words suffer and sufferer in relation to chronic illness or disability.  They may be considered demeaning and disempowering.  Suitable alternatives are have (as in I have endometriosis), experience (I experience endometriosis), be (am) diagnosed with (endometriosis).   http://dictionary.reference.com/browse/sufferer?s=t     (Examples in parenthesis added by me.)
 The best alternative, IMO, is survivor.  http://dictionary.reference.com/browse/survivor?s=t

Search string "sufferer vs. survivor" brings lots and lots of ideas and discussions on the topic:
  • Bing =4,030,000 results
  • Google=3,490,000 results 
Obviously this subject has been thoroughly discussed so I won't spend any more time  on it except to note that the first result on both search engines is Sufferer VS Survivor by Tom T, on Cluster Headache blog.
Tom also calls himself a Cluster Head.  Catchy.  The first ideas that come to me to try to make up a catchy name like that for Endo are not family friendly.  I'll keep thinking about it.

Last but definitely not least in my search engine surf on this topic is Sufferer or Survivor? Fibromyalgia from BeePhlis, I am what I am.  It was the pole dancing that got me on this one.

Thanks to Deb and Tom and Dr. Dave and BeePhlis and all the others out there who have been a positive beacon for me through the fog of decades of chronic illness.


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