The ICI Experience:

  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...

Write a haiku about your health focus. 5 syllables/7 syllables/5 syllables. Write as many as you like. Headache, headache, why?  Torment, torture, wish to die. Headache, HEADACHE, WHY? From the Migraine Art Competitions  

Go to flickr.com/explore and write a post inspired by the image. Can you link it to your health focus? Don’t forget to post the image! Photo courtesy of valstar2011 Every rose has its thorn Just like every night has its dawn Just like every cowboy sings his sad, sad song Every rose has its thorn Yeah it does Ekphrasis or ecphrasis is the graphic, often dramatic, description of a visual work of art. In ancient times it referred to a description of any thing, person, or experience. The word comes from the Greek ek and phrasis , 'out' and 'speak' respectively, verb ekphrazein , to proclaim or call an inanimate object by name.  http://en.wikipedia.org/wiki/Ekphrasis So I went to the flickr site mentioned in the writing prompt above, and decided to use the date 5/12/11 (Fibromyalgia Awareness Day) to use the Explore Interesting Stuff feature to check out interesting content that was posted to Flickr on that day.  This photo of the rose with barb...

Reflect on why you write about your health for 15-20 minutes without stopping. There have already been volumes written about why people write about their health and why it's helpful to do so. I have personally written volumes about it, and also about blogging about our illnesses. In 2007 I spoke on a radio program for National Invisible Chronic Illness Awareness Week (NICIAW) titled Blogging About Your Illness. I had so much to say on the subject that I also created a series of blog posts of the same title, divided into Part 1 , Part 2 and Part 3 .  In 2010 the folks at NICIAW asked me to re-visit the subject, so I did. This time I called the two part series The Mechanics of Blogging About an Illness: An Update , and Blogging About Illness Update: Why We Do It and What's New About It . As you can see, I HAVE studied and written volumes about writing and blogging about illness. Scattered throughout are bits and pieces of the answer to today's prompt about why I ...

If you had a superpower – what would it be? How would you use it? I kind of feel like I've been waiting for this prompt for years.  Because I've been wishing for this superpower for years.  No, I don't want to be invisible.  Rachel Ray frequently asks the guests on her show this question, and she says invisibility is a popular answer.  Seems like that's just a way of saying you want to spy on people... For my superpower I would like to be able to transfer how I feel to another deserving person.  A lot of people say they wouldn't wish their pain or other symptoms on their worst enemy.  They're way better people than me.  I wouldn't transfer my health issues to just anyone, just to those who think people with ICI are lazy or a wuss because of how they deal with their symptoms.   My superpower wish probably has a lot to do with the important men in my life (husband, father) dismissing my symptoms as my own weakness.  These ar...

Find a quote that inspires you (either positively or negatively) and free write about it for 15 minutes.  I'm using two quotes.  And some links and pictures to go with my free writing. "Through movement we find health." http://www.nianow.com/  The Nia Technique "Many of my favorite shamans are rock stars. They probably don't even know they're shamans, but they know how to get to ecstasy and back, and how to take others with them. They may not have a license, but they know how to drive." — From "Maps to Ecstasy," by Gabrielle Roth, and as listed in the liner notes of the Carlos Santana album Supernatural http://www.gabrielleroth.com/ Sweat Your Prayers .  Movement as spiritual practice.  Music is my motivation.  I want to dance with the abandon of a child.   Water dancing works too, and it doesn't hurt.  I hope and pray to get back to dancing on my bare feet on a good wood floor.  There are no Nia classes ...

It's finally here - WEGO Health Blog's April 2012 Health Activist Month Challenge !  So without further adieu, I'll get started. The Challenge: Health Time Capsule . Pretend you’re making a time capsule of you & your health focus that won’t be opened until 2112. What’s in it? What would people think of it when they found it? After doing a little research on time capsules (on It's About Time... time capsules, that is , and on Atlanta's Oglethorpe University International Time Capsule Society (ITCS) website) I decided I would want to get a bigger group together to fill the time capsule than just the stuff that I would put in there.  I would have enough to fill a decent sized capsule but really, who's going to care about just me in 100 years?  So I think I would ask all of my colleagues from the 2008 International Leaders Against Pain Conference   group and any readers of The ICIE blog who would like contribute to the time capsule and be pa...

Ready, set, they're giving us plenty of time to go - to prepare mentally and get our ducks in a row in every other way before the  Health Activist Writer's Month Challenge in April.  I signed up already and am going to give it the good ol' Girl Scout try to post for 30 days in a row.  I've never done it before so this will be a first for me.  It's not taking place during the fall holidays - although Easter IS in April, it's nothing like that time before Christmas with all there is to do for those of us who celebrate that holiday! The Health Activist Writer's Month Challenge is hosted by WEGO Health.  They will send out a prompt for each day, or you can write about whatever you like.   I hope you'll join me if you feel up to it, in writing every day about health. It's going to be a lot of fun - I checked out their prompts in November and they were definitely something I could work with.  I'd love to see what you have to say about each of the...

Recently I had my fourth appointment since November at a local neurologist's office. At this appointment I was finally diagnosed with a form of chronic migraine headache: 2012 ICD-9-CM Diagnosis Code 346.11 Migraine w/o aura, w/ intract migraine, so stated, w/o mention of status migrainosus Intractable Migraine sustained, severe Migraine and accompaniments that are not effectively terminated by standard outpatient intervention. May evolve to a chronic and continuing form, similar to chronic daily headache. Status migrainosus -- The medical term for an acute migraine headache that lasts 72 hours or longer.

In November of 2009 I posted XMRV retrovirus: not just for ME/CFS. Today I'm posting this update: UPDATED: In a Rare Move, Science Without Authors' Consent Retracts Paper That Tied Mouse Virus to Chronic Fatigue Syndrome.

Check out this slide show from WEGO Health:  A Health Activist's Guide to Effective Online Advocacy   I think it's pretty cool. View more presentations from WEGO Health Off topic, The ICIE's email subscription service has been having some problems, as in it hasn't been working for the last two blog posts. I hope it's fixed now because I really don't want to have to mess around with trying to figure out what's wrong any more than I already have.