The ICI Experience:

Lisa Copen joins us today as the founder of National Invisible Chronic Illness Awareness Week . This year it is September 14-20, 2009 and there are lots of ways to get involved, including a free 5-day virtual conference. Lisa is on a blog tour to help people get to know about the event and how it can specifically encourage you. Hi, Lisa. Thanks for connecting with us here tonight at The ICIE blog. LC: Thank you for the honor of being here. I read a lot of blogs, but recently I've visited more than ever before and I'm amazed at how the quality and quantity of blogs on health and illness matters have grown over the last couple of years. Both the readers and writers of blogs have changed how people perceive different illnesses, because they reveal not just the symptoms of illness, but the daily lives of the people who live with them. Yes. Speaking of awareness, tell us about National Invisible Chronic Illness Awareness Week. LC: Often I refer to it as just Invisible Illness Week...

i do want to sleep but i cannot do it right please do not blame me Dedicated to my mom, who in spite of her best efforts, cannot understand the difference between a sleep disorder (no stage 4 sleep AT ALL) and a lack of good "sleep hygiene." But she's not the only one; this article, Fibromyalgia and Sleep , which as I'm reading it I'm thinking totally "gets it", ends with " For tips on good sleep hygiene, read "Fixing Sleep Problems May Help Prevent Fibromyalgia." " Sheesh. There are good folks on the trail of real answers. I just wish they'd hurry up already. Click the pic for online access to or for a DVD of the conference. *Haiku = 5 syllables in the first line. 7 syllables in the second line. 5 syllables in the third line.

It's almost that time of year again - National Invisible Chronic Illness Awareness Week , September 14-20. Be sure to mark your calendars - it was a great conference last year, and an even better one is shaping up for this year. Plus, you can go in your pajamas if you want to. I thought the results of last year's Invisible Illness (II) Poll "Hate to Look Great?" were interesting and Lisa Copen generously shares all of her articles, so I'm reprinting it here. How do I respond to the "You look so good" comment? Well, I'm lumping the "How are you?" question in with the "You look so good" comment here, because the former is what people tend to ask me. "I'm hanging in there" seems to be my standard response (it's #1 - must be the standard for lots of people) , but I really don't feel like that response is satisfying. In the future I might try some of "The 54," or a variation thereof... maybe add ...

A couple of blog posts ago I mentioned the results of recent MRIs of my neck and brain ( What do The Tough do when they get ANOTHER ICI diagnosis (or two*) ? ). Last month I had an appointment with a spine specialist to see what might be done about the herniated cervical disc diagnosis that was made from the MRI of my neck. This doctor seemed like a nice guy, and after about 10 minutes and $280 he had me convinced that my next step should be to have the herniated disc replaced with an artificial one. He started rattling off information after we exchanged pleasantries; lucky for me I knew to have pen and paper handy, and I can translate rattle into scribble pretty well. To his credit, he used mostly words that I could understand, or at least spell. He did a short exam on my hands and arms and said good - no loss of strength. Then he told me about something called "anterior cervical discectomy", an operation performed on the upper spine to relieve pressure on one or more ner...

Well, I'm a little slow at getting on this band wagon - you'll have an idea why after my next blog post - but there's this cool thing happening called Patients for a Moment. Read all about it from the blogger who created it, on Duncan Cross . They're already up to the fifth edition , so if you're like me and you haven't even started reading the included blog posts you have a lot to look forward to.

This particular crusade is over, and with a fair ending. Paul Whitcomb, D.C. and the Fibromyalgia Relief Center in the U.S., South Lake Tahoe, California are no longer able to take advantage of unsuspecting people with Fibromyalgia. I'd like to thank everyone who helped make this happen by spreading the word and by sharing their experiences about Whitcomb and the Center. This is from the Consumer Health Digest (CHD) #09-32 August 6, 2009 (CHD is a free weekly e-mail newsletter edited by Stephen Barrett, M.D., and cosponsored by NCAHF (National Council Against Health Fraud) and Quackwatch. ) Fibromyalgia zealot loses chiropractic license. The California Board of Chiropractic Examiners has revoked the license of Paul Whitcomb, D.C., who claimed to have developed a unique method for curing fibromyalgia. In November 2008, the board accused Whitcomb of incompetence, gross negligence, and unprofessional conduct, based on his management of seven patients. The accusation states that he (...

Lately I've been dealing with lots of animal issues in addition to my ICI issues: Foster dog Miley has FINALLY gone to a great home in the country where she won't get run over while she's out running fast, which is her favorite thing to do; fourteen year old best friend Bear is dying and we're doing all we can to make his last days comfortable; and I picked up a beautiful marble cat at the BP station yesterday and brought her home before she got run over in all the traffic (no photo yet). Our local Humane Society is in its beginning stages of development and they don't even have a building yet so I guess I'll be fostering this kitty now. I'm calling her BP - because of where I found her, and because I think the name Bonnie Pearl suits her. So when I found this great article today that links our pet's instincts with our ICI plights and also spreads the word about National Invisible Chronic Illness Awareess Week (September 14-20, 2009), I just ...

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 , ...