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 , ...