The ICI Experience:

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.

I found out about this book when Sophie emailed me, complimenting my blog (that will get you a mention on The ICIE anytime you're promoting a product I like or think is valid - you Viagra people and your ilk can forget about it).  Sophie noted that I also live with IBS, and asked me to link to her book on my blog. You can check it out on her website mentioned in the next paragraph.  I haven't read the book yet but from the excerpts, it sounds good and so far it has 5 stars from ten reviewers on amazon.com.  Sophie also has an excellent website called IBS Tales , with lots of "I've been there too" stories and helpful info including a page about the book that includes a sneak peek at the contents and introduction . Rosalind Joffe of Working with Chronic Illness interviewed Sophie yesterday and has written up a nice article titled One Person's Story . This interview really touched me because my experience with work and an extreme IBS flare was similar to Soph...

I'm a little late getting on the band wagon here; in my own defense I will say that I am blogging in the midst of boxes that have yet to be unpacked and furniture that has yet to find a permanent home.  But The Blog must go on! November has been NaBloPoMo , or National Blog Posting Month, since 2006.  If you're interested in that history, check here .  Wego Health is adding the word "health" to the mix and now we have National Health Blog Post Month.  I'm just getting into this and am still checking out all the resources available on these sites but so far I'm really impressed.  You can look at blogs posted by others or add your own blog posts to the Wego Health site.  They also have their own health blog at blog.wegohealth.com that I think is really good. A pet peeve of mine ever since I heard about NaBloPoMo about four years ago is why do they make these things happen in November? November is an already abnormally busy month for normal people (tho...

Well, I've been busy moving.  And trying not to hurt myself while moving. My friend Aviva at Sick Momma got me thinking about lack of blog posting and the chronically sick person's typical reasons why not, with her post That Which Doesn't Kill Me Makes Me Stronger. Right?   (I had to look up who said that so I'll share it with you:  Friedrich Nietzsche , from The Twilight of the Idols " Maxims and Arrows" sec. 8. The original was actually "Out of life's school of war: What does not destroy me, makes me stronger.") I'm not dead yet and I'm far from destroyed.  My back and neck problems aren't much worse now than they were before the move in August, so maybe I am stronger now.  I'm trying to keep up with the physical therapy for my back that I started before the move and I have added some very mild therapy exercises for my neck.  I'm also walking some because we don't have a fence yet and the dog needs me to do that wi...

I started the ICIE blog on May 19, 2007.  I was recently told I was an " early adopter " in this respect (by Meredith Gould in the comments to her post Fibromyalgia Awareness Day and Why I Give A Hoot ), and  I was wondering what kind of post to do to celebrate my blog's creation when I read about the Tufts University Medical School Patient Blogging Survey on Trish Torrey's about.com Patient Empowerment blog in the post Are you a patient?  Do you blog?  Survey Sez...  (Of course that's bloggers who are medical patients, as opposed to bloggers who are cool, calm and collected.) I took the survey, thought it was short and very interesting, and am looking forward to reading about the results. The more respondents they have the more accurate the results.  If you have a patient blog please think about taking a few minutes to complete the survey: "Lisa Gualtieri teaches health communications at Tufts University. She and her colleagues have put together...

Blogger was down yesterday and most of today so this is one day late.   Toni and I met at the National Fibromyalgia Association's Leaders Against Pain conference in August of 2008.  She's an active member of the very active and long standing Northern Virginia (NOVA) CFS/ME, FMS & OI (Orthostatic Intolerance) support group ( http://cfsnova.com ).  Toni is a prolific writer and I'm really happy and grateful to be able to share her observations on Awareness Day with you today.  She is always very generous about sharing her experiences in helpful and non-judgmental ways.  (If you are interested in a little more background information about the history of the May 12th Awareness Day, check out the blog post I did in 2009, "Today is International Awareness Day, and there are an unprecedented number of ways to participate without ever leaving home.") Without further adieu, here is Toni's article.  Awareness Benefits Me I am grateful to know of Florence ...

Update as of 5/13/11:   I was out of town for three days; when I returned on 5/11 I discovered that my FM Awareness Day Bloggers Unite Event was no longer accessible.  When I left it was in "Accepted" status and when I returned it was in "Declined" status. This is my best guess as to what happened.  An anonymous blogger organized a FM Awareness Day Bloggers Unite Event in 2009.  She disappeared after that event and there was no event in 2010.  I could not find any way to contact the person who did the event in 2009 to ask her about it so I applied for a new FMAD event with BU in my own name and was accepted.  At some point after my event was accepted, the original person came back and reactivated her 2009 FM Awareness Day Bloggers Unite Event for 2011.  For awhile both events by different people were online at the same time but now my event has been "declined" and is no longer accessible. My guess is that there can only be one ev...

I blogged about my Social Security Disability case back in November. As that post is now in my top ten most popular, and I am still waiting for the answer to my appeal to the Hearing Decision, I thought I would run these little tidbits.  The first is from a group called the Social Security Disability Coalition: "It is very important to tell all the media outlets you can (newspapers, TV, radio) about your problems with the Social Security Disability process, the Social Security Disability Reform Petition, The Fullerton - Edwards Social Security Disability Reform Act, and the Social Security Disability Coalition.  This way they will see how widespread these problems are and that you are not the only one going through this.  Also keep in mind that under Social Security Policy DI 23020.005 - One of the criteria for Critical Cases are those with adverse public relations potential.  When the SSA becomes aware of a critical case situation, it is s...

I'm back from the second root canal in two weeks.  I'm still sleeping a lot and am grateful that I can take the time I need for recovery. About the song; it says a lot for me, anyway... (If this video is skipping on your computer, or you can't see it in the email of this post, here's the direct link to it:  The Gratitude Song .) From The Worldwide Gratitude Project , a wonderful project to help us express our gratitude. I'll admit that I have a hard time seeing the good things in my life right now. Any help I can get is much appreciated!  I hope you find something there to help you express your gratiude.

A prayer for Sunday's post seems appropriate. Although I'm getting this post out so late that subscribers might not get it until Monday. Speaking of Monday, I have to have a root canal tomorrow. I forgot about that when I decided to try NaBloPoMo again. I'm not going to try to post tomorrow, which takes me out of the NaBloPoMo competition. I'll have to see how the root canal goes before I decide how often I'm going to try to post for the rest of the month. This Prayer for Peace was written by Thomas Merton , read in Congress on April 18, 1962 and placed in the Congressional Record. It was at the request of Frank Kowalksi, Congressman from Connecticut.  In 1962 the Vietnam War was happening, but it seems to be totally applicable here and now.  It also seems to me that it's a prayer that might be accepted by most religions. What does this have to do with chronic illness, you might ask?  I'll tell you what I think about that at the end of this p...

I usually don't like to use the term warrior, or any other word that makes me think of war or violence, to describe my relationship with chronic illness.  I just don't think it's a productive use of my energy to think of battling myself or anything else.  Then I watched the movie The Way of the Peaceful Warrior, which is based on a true story starring Nick Nolte, Scott Mechlowicz, and Amy Smart.  And I started to re-think the word warrior. From the book: Way of the Peaceful Warrior: A Book That Changes Lives by Dan Millman Warriors, warriors we call ourselves. We fight for splendid virtue, for high endeavor, for sublime wisdom, therefore we call ourselves warriors. ~Aunguttara Nikaya From the interview with Dan Millman, "Peaceful Warrior - From Book to Screen" page 209, at the end of the Peaceful Warrior book: Q: Why is the book called Peaceful Warrior? It's about a gymnast, not a soldier or martial artist. What does it mean to be a Peaceful War...

The other day I wrote about FM being a whipping post for the media among others ( TV show Bones uses fibro as an excuse for murder ).  After writing that post I was inspired to listen to the song Whipping Post by the Allman Brothers Band ( take your choice of the 5 minute version or the 22 minute version) and to check out the lyrics (including a nine minute video of the band, before Duane Allman died). Ah, the music of my youth.  But back to the here and now.  I was then inspired to rewrite these classic Southern Rock lyrics.  Here's the result. I been run down, I been lied to, I don't know why I let that mean doctor make me a fool. He took all my money, and my new car. Now they’re usin’ all kinds of media They’re makin’ fools of us ever’whar. Sometimes I feel, sometimes I feel, Like I been tied to the whipping post, Tied to the whipping post, Tied to the whipping post, Good lord, I feel like I'm dyin'. Some friends tell me, that I’m such a fool, ...

4/2/2016 Update:  The ALJ Disposition Data Spreadsheet has gone the way of lots of software that was state of the art; it doesn't work anymore.  You can see the statistics and comparisons on the post dated 2/26/2011 and titled The Social Security Administration does not like negative publicity . 12/17/13:  Updated all links.  Dot & her Fibro Mom's blog has been gone for years now.  They have a Facebook page but nothing has been posted there since 2011.  I hope they are doing so much better that they don't have time for blogging about illness!   2/29/12 Update:  The Fibro World Blog seems to be offline for now.  I'm leaving the links in the hope that they will be back.  That was really a great blog and I hope Fibro Dot and her Fibro Mom are OK.  I never got around to doing all of the Georgia lawyers like I said I was going to in this post.  Oh well.    I've decided to blog about my Social Security Disabil...

Bones is one of my favorite TV shows; I'll just be glad when fibromyalgia is replaced as the whipping post by some other new and little known about disease.  Unfortunately for the new disease, that WILL happen! We're getting a lot of TV time from the pharmaceutical companies, but I dream of the day when people with FM will be guests on the talk shows, the news shows, something positive about us will be portrayed on the entertainment shows and no one anywhere will dare to make a mockery of such a horrible disease.   (Yes, I know they say it isn't a disease.  It's just a matter of time.  Mark my words.)  So I watched an episode of Bones awhile ago and the murderer was a teacher who, when she was caught said she had FM and that she had pushed a guy into a poisonous fish tank because he had taken a lot of her money for a false cure to FM; then she said killing the guy must have cured her FM because she hadn't felt any pain since! Puh-leeeez! Here's the te...

Here's the Fibromyalgia is BULLSHIT Facebook page.  It has a whopping 113 people who "like" it. Those of us who are active on Facebook know that there are many FB groups (over 500) and pages (407 as of the publication of this post) that advocate support, a cure, all kinds of positive things, for FM.  There are tens of thousands of people who belong to these groups or who "like" these pages.  In spite of the fact that we outnumber this dinky little page by far, I think it needs to be removed because it contains hate speech and it targets people with a disease, people who often also have a disability.  Would FB tolerate a hate page called "Cancer is BULLSHIT?"  It's hard to even wrap your mind around the concept, isn't it? If you feel so called, please join me in asking FB to remove this page. Here are easy instructions: Go to the page by clicking here . Go to the bottom of the sidebar on the left side of the page, where it says "...

And I've decided on the spur of the moment to participate.  Last time I tried this I lasted a week.  This time I'm going the try really hard to write faster and to shorten my posts by breaking them up into multiple posts.  So we'll see how it goes.

From the National FM Association:  Update on FDA rejection of Sodium Oxybate for treatment of fibromyalgia. Here's a link to the first post I did on the topic of Sodium Oxybate for FM:  The FDA is considering approval of another new drug for Fibromyalgia that could help with sleep, fatigue and pain. Sodium Oxybate has been rejected by the FDA so I guess that's that. Some day someone will figure out why I get NO stage 3 or 4 Delta sleep at all, ever (see Finally - sleep study results! ), or they'll come up with a drug to treat the problem safely.  Until then I wait patiently, if also constantly exhausted no matter how much apparent sleep I get. I did get a nice response from the FDA to my letter of support for Sodium Oxybate for the treatment of fibromyalgia.  It's below. The response  also contains a link to a transcript of the meeting where info was presented and discussed by a panel, and to additional meeting material s. On this web page the Augu...

Mixed media Sleeping Beauty , originally uploaded by melanie_hughes *. The NFA is asking people with Fibromyalgia to email or fax the FDA a letter of support for approval of a new drug for FM.  The NFA has even provided a basic letter for us to use: there's one for people with FM who have taken the drug, sodium oxybate (generic name) or Xyrem (brand name), and another letter for people with FM who support approval of sodium oxybate but have not actually taken it themselves.  Go here to see my letter.  The NFA says on October 11 the next important step in the process for FDA approval of sodium oxybate will take place, so be sure to get your letters in before that date. I've done a lot of research on this medication, before and after I tried it.  If you are wondering some of the same things I was, maybe the information and links below will help you. An FDA panel, or advisory committee has actually already said no to sodium oxybate .  I think the actua...