The ICI Experience:

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...

So, I'm trying to get more personal in my writing. I like how my friend Aviva on SickMomma keeps an updated record on her doctor's appointments, etc. on her blog. But this post is even more personal; it's about a crying meltdown I had recently. From Fibro Viv, on Being Credible: If my own family does not support me, what am I to do? During my recent vacation, I was reminded of the lack of support for my current plight (cannot work, waiting for SS disability hearing) I get from some of my family members. I've accepted my father's view that I should just keep on keepin' on. I/we don't discuss the subject of my health at all, except in the most cursory of terms. But when I learned of another family member's (by marriage) feeling that it's not right for me (or anyone else, apparently) to be receiving assistance (which I do, from whoever will give it to me), or applying for public housing (which I'm currently in the process of - I've been li...

Before you know it, it will time to start thinking about ICI Week for 2008. If you want to put it on your calendar now... it's September 8-14, 2008. How can you keep the momentum going? I'll send out periodic blog posts about ideas and plans... * Blog if you blog, write about it on you MySpace site, add it to your web page. Not sure what to write? Post one of our press releases and then just comment. Invisible illness is a topic that is timeless. * Read your local papers, columnists, articles and more. Be sure to take note of what reporters tend to write about illness/pain/personal stories and contact them about your story and NICIAW. They may wish to do a story on you any time of the year, or put your story on the calendar for next September. * If you see a great article on illness in your paper or a national magazine, be sure to write a letter to the editor. * Add a signature file to your email any time. We have 9 versions or make up your own to fit any time o...

Handout for Blogging About Your Illness By Sherrillynn Johnson, author of “ The Invisible Chronic Illness Expericnce” Blog Wednesday, September 12, 2007 at 6:00 p.m. EST Chatroom website address: http://www.restministries.org/pro-chat.htm The following are the resources I have used in putting my presentation together: 'Sick Blogs' Help Afflicted Share News, Seek Comfort http://www.sfgate.com/cgi-bin/article.cgi?file=/c/a/2006/06/14/MNGUAJ9MLM150.DTL WeB LOG Usability: Top 10 Design Mistakes http://www.useit.com/alertbox/weblogs.html Female Bloggers Face Threats: What Can Be Done? http://abcnews.go.com/print?id=3107139 Blogging From Your Sickbed http://online.wsj.com/article_email/SB111516490949023959-Ihjf4NplaN4nJumaIKGbKmJm4.html WHERE TO PARK YOUR BLOG (All free) Blogger http://www.blogger.com WordPress http://wordpress.com/ BUILD CREDIBILITY Get the Healthcare Blogger Code of Ethics http://medbloggercode.com/ ...

Speak no evil , originally uploaded by starshine_diva . This is the best article I've seen yet on invisible disabilities. It's titled " 'But You Look So Good!' and 7 Other Things NOT to Say to a Person With a Non-Visible Disability " and it's from " DiversityInc Magazine: Diversity and the Bottom Line" . Imagine that. Something good from the bowels of corporate America. Forgive my attitude. It'll probably get better a few more years down the road from my experience with that government job where they threw me away because I had one disability too many. Government, corporate, they're all the same, right? OK, back to the good-- The kicker is the last section. It took me a minute to get it, what the 5 second difference meant, and it's so true . Here's the last section: This Means You If you think this won't be a concern until old age, take note: 75 percent of people with chronic conditions are younger than 65. One...

My time slot is: Wednesday 9/12 at 3 p.m. - 4 p.m. Pacific 5 p.m. - 6 p.m. Central 6 p.m. - 7 p.m. Eastern My topic is "Blogging About Your Illness".

S/he is from Canada but it sounds pretty right on for the U.S. too. sick , originally uploaded by jungmoon . From Dominie Bush's 8/4/07 newsletter--Item #5 : FMS/CFIDS SUFFERER IS CARETAKER, Daughter & Mother "Just quickly perusing your latest compilation (fantastic FM/CFS newsletter!!!!!) and as I read am struck by two things. 1) how many people with FM and CFS are prescribed a plethora of drugs to control or supposedly "cure" symptoms and 2) being desperately ill and socially ostracized we who have FM and CFS are almost every time I read about treatment, told that another medication can make the difference or is the missing magic bullet to cure us. Dominie, I have had this illness definitively diagnosed in 1996 but had it for at least ten years before that so for over 20 years I have had it and have tried everything that I have come across to try to get better - all kinds of drugs, eating programs, sleeping aids, exercises, rest, relocations, etc. and a...

The Endometriosis Association has it down pretty darn pat in Toxic Link to Endo : As explained in books including Our Stolen Future, Dying from Dioxin , and "The Endometriosis Sourcebook", scientists have come to the realization that certain chemical compounds, such as dioxin, have profound immunological and reproductive impacts at exposures far below the level known to cause cancer. These chemicals are known as endocrine disruptors and can mimic hormones and interfere with many physiological processes. Scientists are still researching the mechanisms that are used, but they already know that these man-made chemicals persist in the body for years. PCBs (polychlorinated biphenyls) are a group of dioxin-like chemicals that were used in industry until they were banned in the 1970s. Some PCBs persist in the environment for more than one hundred years. I expect that one day everything that's wrong with me that's not strictly due to the aging process will be proven to hav...

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Hello All, I know I've promised to follow up on all kinds of things here in my trusty blog. And I intend to do so. Eventually. But I have just been invited to host an online seminar (webinar?) during the National Invisible Chronic Illness Awareness Week Conference. And guess what subject they want me to pontificate upon? "Blogging About Your Illness"!!! Isn't that just perfect? I'm going to take this as a sign that it's time to get back to the point of this blog (which is the invisible chronic illness experience, in case you've forgotten with all of my fun wanderings lately). Information about scheduling for the Conference will be posted here as it becomes available. Woo Hoo!

We're having a Live Earth Concert Viewing Party on the 7th and you should too! Back on topic, this post is a continuation of my pre-purchase research of voice recognition software posts from 6/14/07 and 6/25/07. Jenni, The ChronicBabe herself, has just started using DNS Preferred 9. I was asking her about the headset microphone. I said: Hi Jenni, Thanks for responding to my email and blog on VR software. I posted another on this subject today. Obviously, I'm at the very beginning of educating myself on the subject. Baby steps. While I'm not able to work and I'm waiting for my disability application to be approved I can't afford to waste a single penny so I've got to get this down before I purchase. Not that I ever could or will be able to afford to waste a single penny. ;-) I'm just starting to research the headset microphone part of it. So the one that comes with the software, that they say is Nuance-approved and noise canceling, is not as good...

Do you live with an invisible illness? You aren't alone. National Invisible Chronic Illness Awareness Week, September 10-16, 2007 gives you a chance to feel "normal." The statistics about illness are staggering: + Nearly 1 in 2 Americans has a chronic condition + 96% of illness is invisible. 60% of the ill are ages 18-60 + The divorce rate is over 75% for the chronically ill + 70% of suicides have uncontrollable physical pain as a factor Sponsored by HopeKeepers Magazine, This week's theme is "Living with invisible illness is a roller coaster. Help a friend hold on!" It's a designated time in which people who live with chronic illness, those that love them, and organizations are encouraged to educate the general public, churches, healthcare professionals and government officials about the impact of living with a chronic illness that is not visually apparent. Join us for this grassroots campaign to help spread the word that those with illness may look gre...

Let's face it... chronic illness can have its humorous moments if we look for them. You know you have a chronic illness when... * You understand all the medical terminology discussed on the T.V. show Grey's Anatomy. * When you hear the term "Club Med" you automatically think of the hospital. * You ask your child to open the "child-proof" bottles of medicine because your hands are too sore. * Your medical records have to be transported on a cart. * To entertain people at parties you recite the side effects of medications as if you are the voice over on a commercial. * Your favorite Oprah program is when Dr. Oz is on. * To get rid of boredom on road trips, your whole family can go through the alphabet and name a drug that starts with each letter of the alphabet. * When you're unable to sleep because of pain, you watch "The Jerry Springer Show" and feel like you actually have a life. * Your spelling has improved...

September 10-16, 2007

I named this blog The Invisible Chronic Illness Experience at first. Then I looked up invisible in the thesaurus and I didn't like what I saw. One of the three major adjectives is "imaginary". As in nonexistent, impalpable, intangible, shadowy, and insubstantial. Definitely not the image we want to project. So then the best words I could come up with were unseen or concealed. "Concealed" is already being used (See www.writefaceforward.com or the book "Just Fine".) Unseen is simple and simple is beautiful. But I've already set up a website on "theiciexperience", In addition to this blog, so I'm not sure what I'm going to do. I guess for now I'm going to do nothing. The name of the website can't be changed. And I definitely feel they must match. So I'll wait and see what happens.

This is a history of my blog/journal attempts prior to this one. I started out at http://sherrillynn.greatestjournal.com/, as a record of the process I was going through in applying for Social Security Disability Income (SSDI) in 2004. Then I was able to start working and the journal laid unused for a couple of years. I worked part time in 2004-2005, then got a full time job in July of 2005. This summer of 2006 I was terminated from the full time job which I really liked, because I was sick with invisible (or concealed) chronic illnesses. Then I decided my blog should be a record of the claim I was filing on the discrimination of my employer on the basis of my disability. Then I (quite wisely) decided it probably wasn't too good to be posting stuff about my discrimination claim against my former employer, while the investigation was going on. Now the blog is about what happened, what's happening, and how I deal with it. I'm trying to channel my feelings into som...