The ICI Experience:

Call Mom from the parking lot of the doctor's office to tell her about it and sob a bit. After all, I did hold it in until I was clear of the office out of respect for my wonderful rheumatologist, Dr. James Mossell III of Tifton, GA - we joked about what bad PR it would be for a patient to walk out through the waiting room full of patients-to-be-seen, in tears. Go to favorite Thai restaurant and order whatever I want. Go hang out in Wal-Mart for several hours. (In my defense I WAS looking at the line of Danskin workout wear; very affordable, very functional, and they remind me of my dancing days.) Get back to the car and remember it all over - and start crying again. Have the words "Thy will be done" come to me out of nowhere. Realize that in the past it's taken literally YEARS after a diagnosis for me to get to this point of acceptance. This time it took about four hours. I'm finding the cycle of acceptance to be a kind of reincarnation thin...

Origin of the event The May 12 Awareness Day event was founded by Tom Hennessy in 1992, and here's the story. (CIND stands for Chronic Immunological and Neurological Diseases and these diseases include Neurofibromatosis, Chronic Fatigue Immune Dysfunction Syndrome (CFIDS)/Myalgic Encephalomyelitis, Fibromyalgia, Gulf War Syndrome and Multiple Chemical Sensitivity. ) This is an excellent interview with Mr. Hennessy by Cort Johnson of Phoenix Rising. The May 12th date was chosen to memorialize the birth date of Florence Nightingale , the English army nurse who inspired the founding of the International Red Cross. Stuff to read, watch, listen to or do CFS State of the Union podcast by Dr. Teitelbaum What You'll Learn Dr. T's podcast will update listeners on the following topics: Latest CFS/FM news — U.S. and global. Recent and upcoming research and findings. New treatments (pharmaceutical and natural therapies). Center for Disease Control CFS Awareness Campaign. Ou...

Interagency Committee on Disability Research (ICDR) Utilizing Online Technology to Determine New Research Directions An ICIE reader has notified me about this ICDR week long period to vote on shaping disability agendas. She has submitted a comment to expand disability to appreciate the role of invisible chronic illness in functional disability. Please help encourage awareness of invisible chronic illness by voting to prioritize this research issue. For more information and complete instructions visit the Web site: www.icdr.us/stakeholders and follow the registration and voting procedures. Voting period: May 8–15, 2009 A couple of hints: After you register go to http://www.icdr.us/ stakeholders/comments.aspx . Then go to "Topic 6: Other Critical Research Issues" The fourth comment down is this "Presently, disability encompasses a heterogeneous population, and this variability in cause and nature of impairment are weakly represented within the disability dialogue ...

Advocacy Action Alert: Media Dear APF Advocates, In recent days the national media has been covering celebrity Paula Abdul’s struggle with pain and her interview that appears in the June issue of Ladies' Home Journal . In this coverage, inaccurate information has been reported that reinforces stigmas and stereotypes associated with pain and pain treatment. Ladies' Home Journal implies negative connotations associated with prescribed pain medication and uses the term “habit” when discussing Abdul’s use of pain medication. Read article>> On Monday, May 4th Fox & Friends anchor Gretchen Carlson mentioned her own recent injury and the use of prescription pain medicine. Gretchen stated she is taking pain medication and “has not become addicted so far.” The link is no longer active. On Wednesday, May 6th CBS Early Show also discussed this topic and Medical Correspondent Dr. Jennifer Ashton inaccurately called pain medications “narcotics” and failed to differentiate...

Well, I'm behind on my blog posting; there have been some big time things going on that I haven't even written about. I've been kind of out of it lately, what with figuring out how to deal with my new diagnoses (Hashimoto's disease, pre-pre-diabetes, severe adrenal fatigue, and low hormone levels for which my rheumy wants to do an MRI of my brain (?!)); and my father has been having some health issues since knee replacement surgery in November of '08. I just got back from visiting him and his wife for a couple of weeks. The good news is they live in Santa Fe, NM and I had a wonderful visit with family, did some shopping and sight seeing - the Georgia O'Keeffe Museum was my favorite - and I was able to help Dad and his wife out some. The bad news is I'm crashing big time after the trip. The view from Dad's driveway in southwest Santa Fe Anyway, while I put myself back to rights, I'll be doing some catching up on blog posts. Awareness Day (of chro...

Well, I've had a year to think about it, since Jenni of ChronicBabe.com alerted me to it last year, and this year I'm gonna do it. The Woman Challenge, that is. In setting up your goals they only specify moderate or vigorous activity, plus muscle strengthening activities, but we can certainly modify that to whatever is within our reach right now. I was going to say that for me that will be - let's see, what's the opposite of vigorous?... but I just looked up moderate in the thesaurus, and I can go with these synonyms where I was having a hard time with "moderate": balanced , bearable , careful , cautious , conservative , considered , controlled , cool , ...

This post was originally published on 4/5/08. I was just responding to recent a comment to it and decided to check its links. I saw that there is at least one important dead link, so I'm updating the post and re-publishing it. The Whitcomb series have been ever popular on my blog (check the sidebar for titles and links to all of them). I was just checking the stats for this particular post on statcounter.com, and I see that someone has visited it 212 times. That seems a little odd to me. Anyone have any ideas for me on that? Anyway, on with the update. Any changes I've made are in green italics. "Silence is fraud's best friend. Word of mouth is fraud's worst enemy. Pass the word!" Fraud Aid Let me say this first and foremost: There is no cure for Fibromyalgia. If there were a cure for Fibromyalgia I would know about it. There. Is. No. Cure. Why, you might ask, am I doing this? I'm really tired of Dr. Whitcomb's holdings (book, website) comin...

Just had to share this -

I turned my lights out, but it wasn't nearly as impressive as the landmarks from around the world are that are pictured in the boston.com story: The Big Picture, News Stories in Photographs: Earth Hour 2009.

Is email the least effective mode of communication? If it is then I'm usually very ineffective at communicating, because I depend on email a lot. I frequently don't feel like talking to people so I use email to insure that I don't lose touch entirely. This video from BNET has given me serious food for thought.

MARCH BLOGGING MADNESS FOR ENDOMETRIOSIS AWARENESS Please sign The Petition to Create Endometriosis Awareness and Understanding . I have Endometriosis. Thankfully, I believe I've made it to menopause with most of my female organs intact. I lost my left ovary to an endometrioma in 2001 and the resulting side effects from referred pain caused by Fibromyalgia started my saga of being unable to work full time and permanently. Hysterectomy is not always (or even very often) the answer for Endo. I'm really glad I realized this way back when I was diagnosed, in 1989. Plenty of docs would have given all or part of my anatomy the heave-ho, in spite of the fact that back then the statistics were that hysterectomy only actually helped with endometriosis about 50% of the time. There's still the possibility that the Endo will grow back. And if you do have to have a "hissy" (as the nurse who attended to me when I had my diagnostic laparoscopy called it) then you're stu...

Hello to all of my regular blog readers (all six of you ;-), and my apologies for not having posted in over a month!!! Too much travel over the holidays and another problem tooth (my dentist: "I used three different pain shots, across three different spectrums, with one directly into the nerve and it STILL wasn't deadened.") have been too much for me. Now I've wrenched my neck (cervical degenerative disc disease, ankolosying spondilitis, bulging discs) and am having a lot of problems with that. Doc wants to do another MRI before saying much about it. Soooo, I just wanted to check in and say I'm going to try to get back to regular posting. I can use my Dragon Naturally Speaking voice recognition software when my neck/shoulder/arm/hand hurt too much to type. But I have to tell you that I've discovered Dragon has a major flaw: If you do a Windows System Restore to a previous point in time, you WILL LOSE ALL OF THE DATA IN YOUR DRAGON USER FILES! I did a Sys...

From Medical News Today, FDA Approves Fibromyalgia Drug - Savella(TM) (milnacipran HCl), A Selective Serotonin and Norepinephrine Dual Reuptake Inhibitor "Although the exact mechanism by which Savella improves the symptoms of fibromyalgia is unknown, some researchers believe that abnormalities in certain brain neurotransmitters may be central to fibromyalgia. Savella blocks the reuptake of both norepinephrine and serotonin, with greater selectivity for the inhibition of norepinephrine reuptake in vitro (does anyone know what the term in vitro means in this context? Emphasis added by me.) . This may be the mechanism by which Savella acts to improve the symptoms of fibromyalgia." and "The efficacy of Savella was established in two US pivotal Phase III clinical trials involving 2,084 treated patients (1,460 Savella; 624 placebo), which showed that Savella demonstrated clinically significant improvements compared to placebo in treating fibromyalgia. The first study was 6 mo...

Last week Sick Momma wrote about those annual holiday letters in Cue the Violins . She likes to receive them just like I do. She worries because she is starting to get dropped of some peoples' holiday card lists because she hasn't had the energy to send any cards out herself for the last couple of years. She writes: ... it's like one more connection with the "healthy" world at large is getting thinner and thinner. Everything just seems harder than it should be, and more complicated than it needs to be. Sigh. I know what she means. For the last ten years I've been dealing with gradually worsening and multiplying chronic illnesses, as well as a divorce. (Yeah, I dragged the divorce out for ten years so I could at least get SOME of the money I put into the house out of it.) It's been at least that long since I've been able to send cards out, and since I had to move to another state and then became unable to work, I've been wanting to send a holi...

Well, it started with the logo of the Fibromyalgia Association UK . She's a gal and she seems to have polka dots on her. Those of us with Fibromyalgia recognize it as a diagram of FM tender points. Polka Dot Gals is also a UK organization dedicated to raising awareness of Fibromyalgia within the press and the media, and they're in the process of a great calendar fundraiser. I've got my calendar and it's wonderful! It's very artistically done and of excellent quality. They got the idea to do this calendar as a fundraiser from the original Calendar Girls of Yorkshire, on whom a movie of the same name was based. Bianca Embley is the founder and Director of Polka Dot Gals, and I had the opportunity to meet with her at ILAP 2008 (which I haven't NEARLY gotten started writing about, what with my additional diagnoses and medical treatment making me sicker than I was in the first place, but I will, I promise!). She is a charming and gracious young lady. Funny, s...

From Wikipedia (emphasis added by me): ShopWiki is an Internet shopping search engine founded in 2005 and launched in early 2006. It was founded by the former DoubleClick CEO Kevin P. Ryan, the former CTO and DoubleClick co-founder Dwight Merriman and Eliot Horowitz. Their primary distinguisher is crawling the internet for stores instead of using data feeds from merchants. In 2006 they received 6.2m in venture funding from Generation Partners. [1] References Kirkpatrick, Marshall. "ShopWiki announces $6.2m in funding." TechCrunch. July 2006. So ShopWiki crawls the internet for every store out there, regardless of whether the stores have paid ShopWiki to have the exposure or not. (I'm not sure yet who pays for this whole set up or where the profit comes in...) It's like a search engine for shopping possibilities, and I must say my first impression is that it works quite well. I started out at the ShopWiki Health and Beauty Guide . Wiki Buying Guides are created, edit...

From the 11/25/08 issue of the Photojojo newsletter (my inspiration for this blog post): "What Are You Grateful For?" Thursday is Thanksgiving here in the US of A. It’s our favorite holiday because it involves: Hanging out with people you like, eating yourself stupid, and falling asleep on the couch in the middle of the afternoon. Some friends of ours host Thanksgiving for all their pals who aren’t going home for the holiday. When they sit down to eat, instead of saying grace, everyone at the table says one thing they’re thankful for. Now that’s a tradition we can get behind. We don’t usually think about the things we’re grateful for, but today’s a good day to start. This week, take some pictures of the things that make you thankful, whether it’s the big stuff: your friends your spark of creativity being able to see well enough take photos or the little stuff: warm socks on a cold night the first cup of coffee in the morning that album that always makes you feel bet...