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…"
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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.

Friday, May 23, 2014

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

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.

Monday, May 19, 2014

On the 7th anniversary of the ICIE... I'm back!

Today is seven years since I published my first blog post on 5/19/2007, Yay, I'm Blogging!

I haven't published a post on The ICIE since April of 2012 so it seemed fitting that I come back to blogging on my anniversary.  I haven't been writing, but a lot of people have still been reading my existing blog posts; I've been getting hundreds of hits per week the whole time I've been gone! I just love those Blogger/Google stats.

I'll make a long story short as to why I've been absent from the blogging world for two years.  In 2011 I started volunteering at least once a week at our local art center.  I did that for about a year, then I started to work there part time as a staff member.  I became the Volunteer Coordinator in July of 2012.

Monday, April 30, 2012

WEGO HAWMC Day 30: Word Cloud

 HAWMC Day #30: Word Cloud. Make a word cloud or tree with a list of words that come to mind when you think about your blog, health, or interests. Use a thesaurus to make the branches of your “tree” extend further. http://www.wordle.net/
There WILL be an explanation for my sudden disappearance midway through the month from this challenge.  It's a good one and it came on me suddenly.  Not one single thing, but a conglomeration of them.  Next post, I promise.

I had hoped to do a few posts in the meantime, but I guess this is it for this month.  

I cut and pasted a bunch of text and the titles from the five all-time most popular posts from my blog (since 2009 anyway, when Blogger made a big change to the way stats are kept) and this is what I came up with.

 Wordle: April 30, 2012
Click on the picture to see it big. 

These are the five posts, in order of popularity as of right now:

The Twilight Saga books, and the first movie: Not just for teen girls!


Marisol Maldonado "comes out" of the autoimmune closet with husband Rob Thomas' hit song & video "Her Diamonds" - check it out; it's way cool


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


Long time no blog post...  (no idea why this one made the top five...?)


FINALLY - Sleep Study Results!


I've gotten over being surprised that my post about the Twilight Saga books and movies is my all time #1 most popular (by FAR), and I guess it will be #1 until well after the last movie is released.  

The fact that "sleep" is the biggest word was a surprise to me, but so appropriate!  

Generally speaking, I love my Wordle.  I might have it enlarged and do something creative with it and make a wall hanging out of it.  Someday.

Sunday, April 15, 2012

Day 15: Writing with Style. My style.

I like to think that my writing style is straight forward.  In truth some people might actually think it's blunt.  But that's me so there you go.

Yes, words flow from my mind to my fingertips to the keyboard.  Sometimes for a complicated post I hand write it first.  I've used one book so far that I like very much, Writing the Natural Way by Gabriele Lusser Rico. She uses a technique called "clustering" that I find very helpful for organizing complicated topics.

I guess I do plan my posts.  Whenever I have an idea I quickly create a draft post with the gist of it or maybe just the link that inspired it and a title that I hope will help me identify it later.  Because right now I have about 150 draft posts for this blog.  So far I have never had any problems with writer's block.  That's probably because I don't usually write unless I want to; these writer's month challenges are the only times I've ever forced myself to write.  Up until this month I've never made it past Day 7 on a monthly challenge.

Like I said, I slap a title on the draft post immediately to help me identify the post quickly.  The actual title usually comes to me by the middle to the end of the post.  Finding a catchy title is in the back of my mind until I have one.  I admit I don't always find one.  That's a hard part for me.

I write best in the recliner with my laptop.

I just went through all of the pictures on WEGO's HAWMC Pinterest page.  It has pictures with links to blog posts and articles about writing.  I was expecting to slam them all in general with some pithy remark like 'I don't write with rules,' but instead I bookmarked and re-pinned most of them as they seem like they could be very useful.  I guess I got an incorrect impression from skimming that page in the past.  I've included one of the pictures below.  It links to the blog that it originally came from, Copy Blogger, who was kind enough to allow others to re-post his work.

I haven't tried to make my blog "successful" or "highly effective" like Darren Rowse or Leo Babauta or Brian Clark of Copy Blogger above and below, to name a few biggies who also write a lot about how they do what they do so that others who want what they have (a blog that makes a good living for them) can give it their best shot.  And I don't know that I ever will.  But it's good to know that the help is out there if I ever do decide to go in that direction.  I would like to have more regular readers and people who comment... and I would like for my blog to be as effective and helpful as possible.  Food for thought, for sure.
22 Ways to Create Compelling Content - Infographic
Like this infographic? Get more content marketing tips from Copyblogger.

Day 14: My Dream Day - at the beach

I'm late with this post; just couldn't seem to get it out yesterday, but I did a lot of other stuff.  Then I was going to quit the challenge all together but the weekly HAWMC email from WEGO came today and I was inspired to continue.  I was also reminded that I still have two "Get out of post free" days that I can use.  But I liked what I thought of for yesterday's post so much that I'm going to go ahead and do it quickly.

My dream day is going to the beach. Nothing too fancy, just going to a nice white sand beach to take advantage of the therapeutic benefits of being there.  I would take someone with me who would enjoy it like I do.  My sister and niece come to mind.

I'd have comfortable lounge chairs, shade available if we got too hot and needed a break from the sun, good beach food like fresh fruit smoothies, and rafts for lounging in the water and just going with the flow of the tide and waves.

Here's the part of the challenge that really got me thinking:

What obstacles prevent you from enjoying your dream day? How important is achieving such a day?

Before reading the passage above and giving it a little thought, it had never occurred to me that I could have a day at the beach.  The fact is that I can get to a very nice beach in an hour and a half.  I would need help with the driving, but it's doable! Considering how much I love the beach and how therapeutic it is for me, achieving such a day is now on my list of Very Important Things To Do.
I have had this day before, as you can see from the pictures below taken by yours truly at Indian Rocks Beach in Florida, 2003.

Friday, April 13, 2012

Day 13: 10 Things I Couldn’t Live Without.

Write a list of the 10 things you need (or love)most. 

Here they are off the top of my head and in no particular order:
  1. My cup of tea in the morning.  Organic Earl Gray, green and chai are my favorites.  With a teaspoon of local, organic honey and some unadulterated cream from a real farm.
  2.  My mom.  Without her I don't know where (or if) I would be.
  3. My sister.  Because she really seems to get how I feel about living with ICIs, and how much I would like to be living and working without them.
  4. Our dog Miley.
  5. Our cat Buttons.
  6. My adjustable bed.
  7. U-shaped neck pillows.
  8. The warm water therapy pool.
  9. Water dancing.
  10. Digital photography.
Photo courtesy of the Shabby Shoppe Blog.  And it comes with a couple of lovely recipes for Chai tea.


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