The ICI Experience:

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.  Chronically Awesome Mankoski Subjective Pain Scale for Chronic Pain Patients by Jules Shapiro Or you can just take this jpg version: 

UPDATED:  March 21, 2016 - also World EndoMarch 2016 day 5/23/14 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. Hidden Clinical Trial Data About Lupron

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. Posted on June 19, 2014 by leitis23 "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 ...

... 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 al...

I found this on the Beyond Basics Physical Therapy blog. It's a great, fun post about getting mega corporations that make "feminine hygiene" products without any kind of ingredient list anywhere on the label. What's up with that? I mean really!

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 . ​

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 plac...

**Public Service Announcement** by Laurel Wells Thompson (feel free to share this far and wide, with attribution)   HOW NOT TO BE A DICK TO YOUR INFERTILE FRIEND: CONVERSATIONAL EDITION 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...

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.

  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. 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 gir...

What’s your writing style? Do words just flow from your mind to your fingertips? Do you like handwriting first? Do you plan your posts? Title first or last? Where do you write best? 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 w...

Describe your ideal day. How would you spend your time? Who would you spend it with? Have you had this day? If not – how could you make it happen? 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...

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: 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.  My mom.  Without her I don't know where (or if) I would be. 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. Our dog Miley. Our cat Buttons. My adjustable bed. U-shaped neck pillows. The warm water therapy pool. Water dancing. Digital photography. Photo courtesy of the Shabby Shoppe Blog.  And it comes with a couple of lovely recipes for Chai tea.

So we challenge you, start with this phrase: “Today I looked in the mirror and…” (Or another sentence you come across.) But sure to – Keep writing. Don’t stop for 15 minutes. Don’t edit. Post. Go! OK.  Here goes.  12:07 pm Today I looked in the mirror and thought I knew HAWMC was going to be difficult this week because I have something extra and major to do every day this week.  So here it is Thursday and I have nothing prepared for today.  At all.  Maybe I should just try to get to Day 15 and stop there.  I have so many other things going on.  Doctors appointments, lab work appointments, trying to get the reason for these daily headaches diagnosed, dental appointments, my teeth are falling apart again - four crowns have to be re-done but I just finished #3 yesterday.  I also have a major special project I'm working on, I guess you could say consulting on, for a local non-profit.  But I made the commitment to try to post every day this...

Imagine your health focus or blog is getting its own theme song. What would the lyrics be? What type of music would it be played to?  My theme song would be Some Days You Gotta Dance by the Dixie Chicks.  Go ahead, crank it up and move if you want to... I've learned to dance in mind when I can't do it in reality.

Write a letter to yourself at age 16. What would you tell yourself? What would you make your younger self aware of? Dear 16-year-old-me, Pretty soon you're going to meet a guy and fall in love with him.  He will consistently keep you out late at night and you will have trouble keeping up with your social life and your part time job, plus going to school full time.  You will be tired all of the time but you will keep going, you will keep up your work and school standards plus you will be a good-time party girl whenever possible.  It will be fun. This will be the beginning of many years of a Type A Personality lifestyle in addition to an active social life.   There's no way to tell if this lifestyle contributes to or causes the multiple chronic and autoimmune illnesses that you will begin to develop at a very early age, but if I could tell you anything it would be this:     There is nothing more important than taking care of yourself ...

The challenge: Keep calm and carry on. Write (and create) your own Keep Calm and Carry On poster. Can you make it about your condition? Then go to ( http://www.keepcalm-o-matic.co.uk/ ) and actually make an image to post to your blog. I think the story of Keep Calm and Carry On is interesting. It all started with WW II propaganda posters put out by the U.K. Ministry of Information. Here's mine.

Try writing script-style (or with dialogue) today to recap an awesome conversation you had this week. I've had a blessedly quiet week.  I haven't had many conversations and at first I didn't think a single one could be considered  "awesome."  Then I checked my trusty thesaurus.com and saw that one conversation could indeed be awesome in the sense of the red synonyms to "awesome," below:    AWESOME *informal/non-formal usage Part of Speech: adjective Definition: amazing Synonyms: alarming , astonishing , awe-inspiring , awful , beautiful , breathtaking , daunting, dreadful , exalted , fearful , fearsome, formidable , frantic , frightening , grand , hairy *, horrible , horrifying, imposing , impressive , intimidating , magnificent , majestic , mean , mind-blowing * , moving , nervous , overwhelming , real gone, shocking , something else, striking , stunning , stupefying, terrible , terrifying , wonderful , wondro...

Write about what you want today. In light of my haiku post yesterday, I thought I should do an update on my headache status.  I first wrote about the daily headaches I've been having since the beginning of last year, in February 2012 on Another ICI Diagnosis .  Since that blog post, my neurologist has taken back the migraine diagnosis. I don't have any aura or visual disturbances ever, throbbing pain is rare for me, I have occasional nausea but never any vomiting, rare and then only mild sensitivity to light and/or sound.  So you can see I'm missing most of the major symptoms of migraine.  I do occasionally have piercing pain on one side/temple. I just have a headache, i.e. pain in my head, almost every day.  It's usually an actual ache and it's usually at least a level 4 on this Comparative Pain Scale , sometimes a 5 or 6 but never more severe than that.  Thank heaven for small favors. So the neurologist is thinking maybe it's low cerebral sp...