Saturday, April 23, 2016

Endometriosis Foundation of America continues the awareness and education of our March Awareness Month into April with short videos by Padma Lakshmi, Allison Williams and so on.

Here are a few videos from the Blossom Ball this year.  Start each one individually because it really annoys me when a video starts as soon as I click on a site and won't stop.  They're all short and sweet.  Especially the one on the far right. Allison Williams' letter to endo for Lena Duncan.  Enjoy.

Endometriosis Foundation of America from Endofound on Vimeo.

In case you don't know who Allison Williams is, like I didn't:

Allison Williams

Allison Williams is an American actress, comedian, and singer. She is best known for her role as Marnie Michaels on the HBO comedy-drama series Girls. Williams was born and raised in New Canaan, Connecticut, and is the daughter of former NBC Nightly News anchor and managing editor Brian Williams and Jane Gillan Stoddard, a T…

I would like to post more stuff from Endofound, but some of the information they are giving out is not correct, it's dated.  I'll get more into that if and when I can.  Right now I'm just so tired.  So much more I want to do.  But I'm in such terrible pain, and I'm so tired and having had endo for all these years (I'm 59), has done other damage to my body and health that I'm finding out about now.  So I'll post when I can, and thanks for reading the ICIE. 

Friday, April 1, 2016

Sorry, Ma

My DM (Dear Mother) thinks that blogging is bad for me.  Sorry, Ma.  I've gotta do what I've gotta do.  And I've gotta do this.

A reminder to myself:

A photo posted by Well+Good (@wellandgoodnyc) on

Thursday, March 31, 2016

Best ever: Mankoski Subjective Pain Scale for Chronic Pain

P.S. The creator of this fabulous document has endometriosis.  And you must upload a good document to Scribd in order to download this one. 

Or you can just take this jpg version: 

Monday, March 21, 2016

Lupron for Endometriosis - NOT!, and a little bit of my story - Endometriomas

UPDATED:  March 21, 2016 - also World EndoMarch 2016 day


I just stumbled across this article/post about the nightmare of Lupron, on Pinterest.  I'm sharing it here because it is well written, factual, and it's a small sample of the insanity that has surrounded people with Endometriosis for decades.  And because I'm so glad I didn't take Lupron or any of the other useless but dangerous drugs that were being promoted for endometriosis back when I was first diagnosed.  (I have the Endometriosis Association, founded in 1980 by Mary Lou Ballweg, to thank for providing me with the knowledge and courage to buck the medical system from the beginning of my diagnoses.)  The nightmare is that doctors are STILL prescribing Lupron for Endo.

Wednesday, October 1, 2014

Is this what's wrong with me? Am I lost in grief? Reblogged from Then Everything Changed.

Sorry I haven't been able to put out any original blog posts for several months.  I'm going through something and I can't write about it yet because I'm not sure exactly what it is. I think I need to get through it and get some perspective before I can write about it.  I'm not even able to read much right now (chronic migraine) but I do still occasionally come across something that I identify with strongly or am really moved by... like the post below that I'm reblogging.  It's got me to thinking along the right track, I hope.  And I hope it will help others also.  
Lost  in Grief
Originally posted on Then Everything Changed: A Glimpse of Life With and Without Invisible Illness.

"For the majority of people coping with chronic pain or illness it came on suddenly while we were innocently living normal lives.  Whether we were nine or fifty years old chronic pain brought about devastating changes in the life we knew.  These are no small changes, no small loses.  Marriages end, jobs are lost, homes are lost, confidence is lost, we are limited and altered in ways we never imagined.  Yet we do our best to limp along, many of us fighting like hell to find our way back to the life we once knew.  The truth that none of us want to admit is that that life is gone.  It’s true and it hurts, it’s a crushing conclusion and it’s an inevitable conclusion.  What we need to do before we go any further is allow ourselves to grieve for what we have lost. That will take time and a…"
View original 1,197 more words

Friday, July 18, 2014

For the one year anniversary of my endo excision surgery...

... I shall share with you this wonderful post about a surgery very similar to mine that happened this month.  But it's from the perspective of the waiting room, by Erin's friend, Marissa.  I'd say she's a very good friend.  The post is hilarious AND it made me cry.  It's great.  Sigh.

Putting the ME in EndoMEtriosis-Part 1

on Erin's Guide to Living Blog

If you've read my blog at all, you know I like to put pictures in my posts.  This is a word picture, but I think it goes.

Erin & Marissa, I hope you're new online friends.  And to all of you out there that I've met online (NOT just Facebook!) since I started blogging in 2007, I'm really, really thankful for you.  Especially since I moved in 2011 and had less than a year to make face to face friends in my new city before I had to start figuring what was wrong with me this time.  It's been a long hard road and I'm not at the end of it yet.  But I know all of you virtual buddies will be there for me.  I'm also super grateful for the closed groups I've found that deal specifically with the health conditions I have to learn about now:  Nancy's Nook Facebook group for Endometriosis Discussion and Education, and happypelvis group on Yahoo.  I really don't know what I'd do if I had to learn about this stuff all alone, and there's literally nothing better than being able to communicate with others who have been or are going through the same thing you are.  Bless y'all and keep y'all.  (Maybe I've been in the south for a decade too many...??)

Peace, out.


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.

Friday, May 30, 2014


**Public Service Announcement** by Laurel Wells Thompson
(feel free to share this far and wide, with attribution)



About 11% of women are unable to conceive within one year of "trying," so if you are a person that breathes air, you have probably encountered one of us. It's very tempting to offer words of comfort or advice, or to ask questions, but very often there is a disconnect between what you're saying, and what your infertile friend (heretofore referred to as YIF) hears. Allow me to translate some of the most common attempts at sympathy:

You: "Just relax!"
YIF hears: This is your fault, if only you could be like everyone else you could make this happen.

You: "Everything happens for a reason/it's all in God's plan"
YIF hears: You're clearly not cut out to be a parent/God wants everyone to be happy except for you.

You: "Why don't you just adopt?"
YIF hears: Give up. You're never going to get pregnant.

You: "My friend's cousin's aunt's neighbor tried EVERYTHING to get pregnant, then they gave up and it happened.
YIF hears: Just keep on spending every red cent you can scrape together, push your body to the limits of medical possibility, destroy your marriage/partnership, hit rock bottom....and THEN you'll get pregnant.***

***and a footnote about this anecdote: People tell this story because it's EXTRAORDINARY, not because it happens all the time. You never hear someone say "my friend's cousin's aunt's neighbor wanted to get pregnant and then she did," because that story is BORING. Please stop telling this story as if it happens every day. It doesn't.

You: "At least you don't have to _________ (insert petty complaint about not being able to sleep in, watching the same Disney movie ad nausaem, etc.)"
YIF hears: Oh that thing I have that you don't? I don't even want it (because I'm a horrible ingrate with no soul).

Even mental health professionals will join in on infertility bashing:

Psychiatrist:  You're not "really" infertile because you are "still young" (I was 33!) and you could always "decide to do IVF." 
YIPatient:  So much for helpful therapy!  I kinda wanted to punch her.

This one (above) is from an anonymous YIF.  She kind of explained it all like this:  "I've been TTC (Trying To Conceive) for like 4.5 years, and there is nothing more hurtful than people who act like infertility is no big deal."

So there you have it. One thing about infertility (and especially many of the pharmaceutical hormone treatments involved with it) is it can make a b* cranky. Next time a friend confides that she is having a tough time getting pregnant, consider a simple hug and I guarantee the phrase "just let me know what I can do to support you" will go a lot further than you think.

*And just for fun, here's a helpful info-graphic about the causes of infertility. Believe it or not none of them is attributed to not being able to relax.

*This graph shows only female factors for infertility.


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