Archive for the 'FaceBook/Twitter/Social Networking' Category

Update: Free Empathy Call, Online Chat & Webcam Chat Details – Oct. 1&2

This is an update to my previous post. If you want to read the details of my personal experience with the call last year, check it out.

A globe brightly covered with the colorful flags of all nations and people that look like paper dolls standing in a circle around the globe holding hands. The 12 people are each a different shade of the rainbow, from red to purple.

Global Connection

However, if you simply want to learn the nitty-gritty of how to attend the call or one of the online events for the United Nation’s International Day of Nonviolence in honor of Gandhi’s birthday, here it is:

In case this was clear before, this is a FREE call. Twenty-four hours of continuous empathy are available to give, receive, or witness. If you would enjoy making a small donation in appreciation of our organizing efforts, we will happily accept, but the point of the call is to make it available to everyone (as someone said to me recently) “as a love offering.” That’s what it is! Free love! It’s priceless. <wink, wink>

Every two hours a different facilitator, or team of facilitators, will be hosting — bringing their own perspectives and experiences to the call. Note: For technical reasons the 24-hour period has been broken up into six (6) four-hour “sessions,” but you can call in (or leave) any time during any “session.”

The call STARTS Monday, Oct. 1 at 6:00 PM EDT


ENDS Tuesday, Oct. 2 at 6:00 PM EDT.

(If you’re not in the Eastern US, you can find out when the calls are in YOUR time zone using this time zone converter. If you are more visually oriented, here’s a map of the world’s time zones.)

You do need to register in order to get a call-in number and PIN. Find all the details and register here.

Secondly, the online chat is set up! It will go from noon – 2:00 PM US Eastern Daylight Time (9AM – 11AM PDT or 16:00-18:00 GMT). Click here to enter the chat room. Have questions about the chat? Contact me.

Thirdly, someone else has also now scheduled a face-to-face empathy by webcam for October 2, from 1:00 AM to 3:00 AM US Eastern Time (October 1 from 10 PM – 12 AM US PDT or 05:00-07:00 GMT). To register for empathy by webcam, enter your name and email address at

If you know someone who doesn’t have web access who would like to register for the calls, please contact me and I’ll get in touch with them by phone.

P.S. It just so happens that Marlena, my wonderful teacher, will be offering a new series of her classes in October. “Healing Listening, Healing Talk” is the name of her classes in Nonviolent Communication for people with disabilities and chronic illness. If you’d like info about the classes, contact me, and I’ll email it to you.

Hope to “see” you on a call or chat room!

– Sharon and Barnum, SD/SDiT who is sooo eager to work because we have not been doing enough training for his taste!

P.S. Yes, I will return to dog blogging again after this!

Call for Posts: April Assistance Dog Blog Carnival

Assistance Dog Blog Carnival graphic. A square graphic, with a lavender background. A leggy purple dog of unidentifiable breed, with floppy ears and a curly tail, in silhouette, is in the center. Words are in dark blue, a font that looks like it's dancing a bit.

You’ll be sure to be affected by what you read, especially if the writing is effective!

Patti, a puppy-raiser for Leader Dogs, has has put up her very well-organized and thoughtful call for entries for the seventh ADBC. The theme is “affect/effect.” April Fools! Go read her post at plays with puppies to figure out which is which is which!

The ADBC is always chock-full of engrossing and entertaining posts. Please join in! Add your story to the mix, whether humorous or poignant, educational or conspiratorial, affective, effective, or invective!

If you’re new to the ADBC, read all About the Assistance Dog Blog Carnival.

– Sharon, the muse of Gadget, and Barnum SD/SDiT

P.S. I know I just said I was taking a hiatus, but I didn’t realize I hadn’t posted a carnival announcement! During my hiatus, I’ll try to post brief Barnum-related updates on the After Gadget Facebook page. So, if you want to keep up with Barnum and me when I’m posting less, Like” us there or follow us on Twitter.

A Plagiarised Writer’s Response to #PIPA & #SOPA During the #Blackout

Cross-posted at Bed, Body & Beyond and Occupy at Home

If you go to Wikipedia today, you will find it blacked out — along with many other websites, blogs, twitter accounts, and more. However, on the Wiki page, along with the blackout is a way to contact your representative to tell them why you oppose PIPA/SOPA (or to learn more information about these bills, if you’re not familiar with them).

I encourage you to make your voice heard. Here is what I wrote to my representative and senators. Feel free to use whatever is relevant or useful to you:

As a writer who has had my work stolen — shadow companies were selling my articles under their own copyright on Amazon, as well as websites that have stolen my blog content and reprinted it without permission on advertisement-filled pages — I am very sympathetic to the aims and goals of SOPA and PIPA. In fact, multiple articles were stolen and sold on Amazon from a feminist newspaper I was in by this one company, and the editors and publishers of the magazine had tremendous difficulty getting Amazon to stop selling this stolen work.

I wonder how many of my other stories have, or will be, stolen — particularly because one of the genres I write in is erotica, and that seems to be an especially popular genre to steal and publish under another name. I work very hard on my stories. It’s no small feat, because I am severely disabled, and each time I write, it exhausts and sickens me. But I continue because it’s my passion and my joy and my job in this life.

I use the internet for everything — work, social interaction, news, research for work, research on my medical conditions and connections to others with my illnesses, personal study, and more — everything, really. I am bedbound due to chronic illness so it’s my connection to the world outside my bedroom. The idea of what PIPA and SOPA could mean for internet freedom and literacy is chilling to me. I am absolutely opposed to SOPA and PIPA, even with my personal experiences of internet piracy.

Megacompanies like Amazon need to be held accountable. They did their best to evade me, making their legal department all-but-unreachable, and then when I threatened them with legal action, they simply took down the pirated article without acknowledging my correspondence or compensating me for my stolen work. The big money-making machines, like Amazon, need to know that the DOJ has them in their sights, that authors need to be respected and protected.

But indiscriminate, sweeping legislation like SOPA or PIPA is not the answer. It throws the baby out with the bath water. It will not stop the internet megacorporations from their sloppy, unethical (and lucrative) practice of ignoring stolen work, but it will seriously damage the free exchange of ideas and information that is the life’s blood of the internet. The people of the internet are united in our opposition to SOPA and PIPA. I ask you to listen to your constituents, not corporate interests.

Thank you for your time, for reading, for listening, for following the will of the people.

P.S. If you have tried to email your representative or senator and gotten an error message where their website is supposed to be, that’s because so many people have registered their opposition to SOPA/PIPA that we’ve crashed their sites! Keep it up! You can still contact them on their Facebook pages or via Twitter.

Waspish Wednesday: Komen Foundation Pinkwashing Us with Perfume (with a side note on #Occupy)

Alright, so technically it’s Thursday, but I’ve had so much going on, this is the first chance I’ve had to write this post. To whit, the Susan G. Komen Foundation is still pinkwashing consumers. Some of you might have seen my tweets and Facebook links about this, or read my DTOX Radio blog post. I’m taking it to you, my blog readers, now before October, “Breast Cancer Awareness Month,” is over, because there is more to be done, and it’s really very easy to do. It also might teach you a lot you didn’t know.

Let’s start with one of the most disturbing facts about the pinkification of breast cancer: It is actually preventing breast cancer awareness. The very thing all this pink ribbon shit is supposed to do — raise awareness about breast cancer and get women to take preventive measures? — has the opposite effect.

But, it’s not just that. It’s worse. Taking the offensive, ridiculous corporatization of “girly cancer” to the next level, the Komen Foundation is selling a perfume to raise money for breast cancer prevention!

The perfume is called “Promise Me.” As in what?

  • “Promise me that you will never buy or wear this perfume because it will make anyone with fragrance sensitivity sick?”
  • “Promise me that you will make the connection between people with breast cancer and people with MCS, because both have their disease as a result of chemical injury (poisoning) by things such as the petrochemicals in perfume?”
  • “Promise me you won’t wear this perfume around anyone getting chemotherapy, because it will make them sick?”
  • “Promise me you won’t buy into a corporation pretending to be a grassroots organization putting fundraising ahead of health?”
  • “Promise me you won’t buy into the pinkwashing the Komen Foundation is engaging in as it tries to backpeddle from their deceptive practices in the name of fundraising?”

Breast Cancer Action (@BCAction on twitter) has been calling Komen to task for their pinkwashing of breast cancer and irresponsible use of carcinogenic agents to raise money.

If you missed it, BCA’s press release to RAISE A STINK on this subject can be found here.

I signed on to the petition and email the Komen foundation. I got this form letter back from them. I felt very angry about it:

Thank you for your email to Susan G. Komen for the Cure® about the Promise Me fragrance. The fragrance was designed especially for Susan G. Komen for the Cure by TPR Holdings, which is donating $1 million to Komen annually for breast cancer research, education, screening, and treatment programs. The funds raised through the sale of the perfume will be put to good use in the pursuit of that goal.

Our first concern is always the safety and well-being of women and men facing this disease. To that end, our partners’ products are subject to review by our Medical and Scientific Affairs team, which evaluated the perfume’s ingredients, the latest research, and guidelines from the U.S. Food and Drug Administration.

According to our research, the ingredients found in Promise Me are within fragrance and cosmetic industry standards, and at these levels have not been shown to elevate breast cancer risk in people. At Susan G. Komen for the Cure, we support evidence-based medicine, that is, decisions based on current facts and knowledge.  In addition, we make this information available to our constituents, respecting that they are intelligent consumers who make informed decisions about the use of products based on evidence. As new research and new findings are published, we will certainly take them into account.

Nevertheless, at Komen’s request and to be sensitive to these concerns, the manufacturer agreed to reformulate the perfume. The last batch of the perfume was manufactured in May of this year; we expect manufacturing and sale of the reformulated product to begin in early 2012.  We do not intend to ask the manufacturer to recall or remove unsold products.

Komen has always believed that ending cancer requires research about how it begins and how it might be prevented, which is why Komen  has invested more than $65 million to prevention research and an additional $7 million supporting 18 projects investigating environmental estrogens, pesticides, steroid hormones, and nitrites/nitrates and their relation to breast cancer.

We’re also taking action for clarity and consensus around the direction that environmental research should take in the future, which is why we requested – and are funding – a $1 million study by the Institute of Medicine to answer that question. We expect IOM’s recommendations in December, along with IOM’s assessment of evidence-based strategies for individuals to reduce their risk of breast cancer.

Komen is strongly committed to addressing breast cancer through science, advocacy and community and global outreach to achieve our mission to end breast cancer, forever.

I’m going to deconstruct this reply based on my 16 years of experience as an environmental health activist. Then, I’ll give you the info on how Breast Cancer Action views this response.

First paragraph: This corporate buddy program is going to bring in a lot of money. That’s our first priority.

Second paragraph: We used FDA guidelines. Of course, since the FDA doesn’t follow its own guidelines for testing or labeling cosmetics, and in fact lets perfume manufacturers hide behind “trade secret laws” that keep those untested or known toxic ingredients secret, FDA guidelines really amounts to a free-for-all, with no regulation.

The third paragraph is so dense with misleading language that it requires several bullet points:

1. “The ingredients found in Promise Me are within fragrance and cosmetic industry standards” = see links above, that fragrance and cosmetic industry standards are set by the industry, itself, to avoid regulation.

2. “These levels have not been shown to elevate breast cancer risk in people” = “We don’t actually know if these chemicals elevate breast cancer risk in people, there’s just not enough proof yet to say we know. We also are not mentioning other types of chemical injury/health damage known to be caused by perfume chemicals, nor studies of fragrance chemicals’ effects on laboratory animals or the environment.”

3. “At Susan G. Komen for the Cure, we support evidence-based medicine, that is, decisions based on current facts and knowledge.” In other words, we only will believe that something is harmful once it has been on the market long enough, and enough people have gotten sick, died, and/or brought suit against us, and enough time has elapsed that the chemicals have been proven beyond a shadow of a doubt to cause illness, that it is in fact dangerous. We do not follow the Precautionary Principle, which takes the common sense approach that you first prove something is safe before introducing it into the environment and people’s lives and bodies. Instead, we believe in releasing products without sufficient testing, and only when they are known to be highly dangerous, are they removed from the market (when the damage is done). That is Science!”

4.  “We make this information available to our constituents, respecting that they are intelligent consumers who make informed decisions about the use of products based on evidence.” In other words, “People should just know, without being presented with all the facts, that the products we, a health advocacy organization, are promoting may be hazardous to their health, so if they get sick as a result, it’s their own fault for not being informed consumers.”

5. “As new research and new findings are published, we will certainly take them into account.” Again, “Once we have enough double-blind, placebo-controlled studies proving that these perfume chemicals are dangerous, we’ll switch to something else (which has not yet been tested, either).”


Fourth paragraph: We’re still going to sell the stuff we know is hazardous that we’ve already made, but we’ll reformulate a new perfume that has slightly different ingredients, but will still, of course, because it is perfume made up of synthetic chemicals, be hazardous to health and the environment. But, once you know what’s in it, it’ll already be for sale, too.

Fifth paragraph: We’re spending a lot of money, folks! We are spending this million and that million, and we are even examining some environmental factors, just not the ones that affect our bottom line.

Sixth paragraph: We’re using a tiny percentage of our budget to discuss how we want to investigate “environmental research,” but we’ll only listen to “evidence-based” strategies, which is our way of saying that we can pick and choose which “facts” are most convenient for us.

So, that’s how I parse their response. Breast Cancer Action was equally unimpressed with the Komen Foundation’s response, which they say, Raises More Questions than It Answers.

If you would like to get involved in the effort to uncover the true nature of breast cancer research, funding, and other pertinent issues, BCA has a fantastic toolkit available (in PDF form):

With Breast Cancer Action’s Think Before You Pink Toolkit, you’ll get the resources, information, and tools you need to understand the truth behind pink ribbon marketing, the conflicts of interest in the cancer industry, and why so many women are still being diagnosed—and help others learn about it, too.

The toolkit gives the history and background of pinkification and how corporations have jumped on the pink bandwagon to cash in on concerns about breast cancer while selling products that promote breast cancer! THAT’s what pinkwashing is!

It’s easy enough to see the corporatization of breast cancer on your own, without any materials from an advocacy organization. Just put “Susan G. Komen” into your Twitter search box, and you’ll see hundreds of tweets about winning or buying cameras, clothes, purses, bras, and fashion magazines in the name of supporting the Komen Foundation. Forbes has even profiled the Komen CEO in this article, “Susan G. Komen CEO: Too Much Pink Is Never Enough.”

Meanwhile, here are some easy things to do to raise a stink:

You can use BCA’s handy-dandy form that just takes a moment to fill out and will then get sent to the CEO, chief marketing officer, and vice president of Komen for the Cure.

You can also contact Komen for the Cure and tell them in your own words, “Making and marketing a product to women that contains synthetic chemicals is NOT the way to fight breast cancer!”

You can tweet the Komen Foundation at @komenforthecure

Or use snail-mail: Komen for the Cure, 5005 LBJ Freeway, Suite 250, Dallas, TX 75244

Phone: 1-877 GO KOMEN (1-877-465-6636)


Maybe it’s hard to think about this with all the global upheaval occurring. I plan to spend the next week’s blogs on #Occupy — specifically how people with chronic illness and disability can get involved in the efforts.

But I needed to do this first, because the #Occupy movement and the Think Before You Pink campaign are sisters:

Are you having trouble focusing on this or other “small matters” because you are wanting to work on the #Occupy movement? They are very much related. This excellent blog post, Telling the truth is a revolutionary act, by a staff member of Breast Cancer Action who was feeling this conflict and came to some profound realizations about the connections between the work she was doing, and the #Occupy movement.

Please click on this link to do your easy activism by sending a letter to the Komen Foundation. It will only take you a minute. And then, back to my regularly scheduled Barnum updates and lots — I hope — about #Occupy and how people with chronic illness and disability can get involved in the movement.

– Sharon, the muse of Gadget (who died of cancer despite getting lots of exercise and not smoking, drinking, or eating fatty foods), and Barnum, SDiT and budding RETRIEVER!

Signal Boost: Lyme Survey & New MCS/EI Community

Lymies! Please speak up about treatment options! (formerly CALDA), has created a quick and easy survey tool for people who have Lyme disease. This organization has been a power in getting Lymies’ voices heard and affecting public policy and educating the medical profession, patients, and the mainstream about Lyme and other tick-borne diseases.

Their LymePolicyWonk site is the activism arm of the organization. Why is this survey important? Here’s their answer:

The treatment guidelines of Infectious Diseases Society of America (IDSA) are more than 5 years old. That means they will be taken off the National Guidelines Clearinghouse in January. It also means that the IDSA is now revising those guidelines. According to the Institute of Medicine, guideline developers must consider patient values and preferences to be considered trustworthy. Our last survey found that 80% of patients would not choose to be treated under the IDSA guidelines. So patient trust in IDSA Lyme treatment guidelines a big issue. But when was the last time the IDSA asked you what you valued or what you preferred in the treatment of Lyme disease? The answer is: NEVER. It’s time we do something about that. We are conducting a survey to find out what you think is important about treatment options, choices, risks and benefits. Our last survey drew over 4,000 responses. Let’s do it again and remind the IDSA that patient values are central to treatment guidelines!

Here’s where you can find the survey. Please spread the word to others you know with Lyme disease!

One MCS/EI Community Closes, Another One Opens

People with multiple chemical sensitivity (MCS) or environmental illness (EI), have been networking, chatting, sharing information and supporting, and blogging at The Canary Report for the last few years. However, Susie Collins, who owns and operates the ning-hosted TCR is taking a year off to attempt the controversial neural-retraining protocol. We wish her well on her journey!

Fortunately, someone else has stepped forward to start up a new MCS community, also hosted on ning. It is called DTOX Radio. Those who are familiar with ning social forums (ChronicBabe, Lyme Friends, TCR, Planet Thrive) will find the setup familiar. Unfortunately, like other ning forums, it is pretty inaccessible to those who are blind. If I find out about blind-accessible MCS networks, I will definitely blog it. Meanwhile, you can check out or join DTOX Radio here.

Okay canaries, please chirp this up! Tweet and otherwise spread the word!

– Sharon, the muse of Gadget, and Barnum, SDiT

Round-Up: Assistance Dog News, Notes, Updates

Today is a bit of a roundup. Too much going on. Can’t devote a post to any of these topics alone.

First of all, to all my femme sisters, happy International Femme Appreciation Day! I wanted to do a post on this topic, but I couldn’t manage. So, if you want to read some good, very diverse writing on femme life and identity, including several essays that deal with disability in some way (one of which is by me, and another of which is by Peggy Munson, who also has CFIDS, MCS, and Lyme), I suggest the two-volume set Visible: A Femmethology.

Of course, in the comments, feel free to tell me how much you appreciate me, as a fabulous femme dyke. Just an idea. (Note: You can appreciate me even though I didn’t manage to publish this till July 3, instead of July 2.)

And now, in assistance dog news.

First, the less cheery news items. . . .

Goodbye to an American hero, Roselle of GDB. Sadly, Roselle, the guide dog who led her partner out of the World Trade Center shortly before it collapsed on September 11, 2001, died last week at the age of 13. There is a book coming out about her soon. Here’s a news story on Roselle’s passing.

Restaurant denies access because of “too many” service dogs. Recently, thirteen people who had reservations for dinner at 5:00 PM at a Dedham, Mass., restaurant were turned away, because six in the party are blind and had their guide dogs with them. When the store management refused to seat the group, they called the Dedham police. (BTW, Dedham is not too far from my hometown.) The police officer refused to uphold the law, kept on saying how he has a daughter who uses a wheelchair, so he understands, but they are being confrontational and should leave. (With allies like that, who needs, um, allies?) He also did helpful things like, when one of the blind people asked  for his badge number, he held up his shield to show them. Great!. Here is one of many news stories on it. You can also find it on Twitter, with the hashtag #bambooadafail

In happier assistance dog news. . . .

The International Association of Assistance Dog Partners (IAADP) now has a Facebook fan page! You can visit their fan page here. They also still have their regular, very informative website, that they’ve had for years, which you can visit here.

International Assistance Dog Week is just a month away! It takes place this year from August 7 through August 13. Assistance dog partners, trainers, puppy raisers, and others are encouraged to do something fun and/or educational to raise awareness about, and good will towards, assistance dogs and their partners. I don’t know yet what I’ll do for it. I’m pondering. You can get materials and ideas from the official Assistance Dog Week website, and there is also a Facebook fan page to visit for ideas and community.

If your “Please Don’t Pet Me, I’m Working” patches are not effective enough, there are some good ideas at the Please Don’t Pet Me website and especially at their Facebook page. I particularly like some of the wording on this placard that a SD partner made and attached to her dog’s mobility harness handle. It’s very eye-catching, with lots of colors, and the way it’s designed. It says, “Do not pet. Do not distract. Mobility & Medical Alert Service dog. Questions stress person ~ has brain injury ~ please stop.” Amen to that.

And lastly, remember that the fourth Assistance Dog Blog Carnival is coming up! The July ADBC is being hosted by the wonderful Kali at Brilliant Mind Broken Body. The theme is “Differences.” Make a difference in the carnival and write and submit a blog post!

Must. Train. Dog.


– Sharon, the muse of Gadget, and Barnum, SDiT!


I keep deciding I’m going to save my energy for training Barnum and getting my writing career going again, and then things come up. Things like deciding to try to save someone’s life.

For months, I’d heard from friends about a good friend of theirs, Elizabeth Chalker (many of them call her Lizzy), being desperately ill, and how she was dying because they couldn’t find a doctor to treat her.

Well, I’ve been there. When I was really sick, first, doctors thought I had Lyme disease. Then, they decided I was too sick to have Lyme, that it must be something worse to be this horrible, something they didn’t know about. Some of them told me to go away and get diagnosed by someone else, because they didn’t know.

Then, other doctors knew I had Lyme, but because it was such a severe case, because I was so sick and it was so complicated by my other diseases, they said they couldn’t treat me. It was too risky. They didn’t want the responsibility if something went wrong. So, my friends and family thought I was dying.

Looking back, I realize I was dying. At the time, though, I refused to believe it.

So, I thought I understood Elizabeth’s story of isolation and unbelievable suffering and inability to find medical help.

Then I visited her website.

I saw her “before” picture:

Tall woman with long wavy red hair smiles at the camera in a black mortar board cap and black gown with green, white, and blue robe indicating advanced degree and holding a black folder presumably containing her diplomas.

Then the “after” pictures:

Close-up of a woman whose face is gaunt and emaciated. Her eyelids are half closed; it appears as if she’s not able to open them all the way nor that she has control over her other facial muscles, which are slack. Her hair is brown and limp. The picture is taken from above, with a pillow behind her head.

I thought, “That’s terrible. I really hope people can help her, but I’m so done in already, it will have to be other people. I don’t know her. People who know her will help.”

More time passed. A friend asked me to help. I made the tough decision to put my needs first.

Yesterday I got an email from a friend of Lizzy’s. She pleaded for help for her. She said, “Just watch this video.”

I watched the video — which another friend made about her, and I changed all my plans for the week.

I was wrong. Her story is so much worse than mine.

This is the video, below. It was very hard for me to transcribe because I frequently had to stop typing because I was crying too hard. It’s very painful for me to watch, because I know that if I hadn’t gotten treatment three years ago, I’d be in Elizabeth’s shoes. Or I’d already be dead.

Honestly, I don’t know how she’s not dead. That’s what doctors keep telling her, too: “You should already be dead.” Really comforting stuff for her to hear, I’m sure.

This is the transcript of the video.

(There’s no dialogue in the video, so it’s accessible to Deaf and hard-of-hearing viewers. The only audio is a song.)

She has had nobody — nobody — in her life except a good friend, Corey, who told me that Elizabeth is “a daughter to me,” who visits when she can — and Elizabeth’s dog, Symon, who — as I discovered from the video — died recently.

She is in bed around the clock, and she is dying, absolutely, unless she gets help. Her organs are failing. Without medical care, she will be dead. She is a devout Christian, and she has held on through “raw faith,” even writing a book about her struggle to survive, focusing on faith. She has asked her God to take her, but she’s still here. I don’t believe in God, and I still cry when I read about that. I don’t know why.

Because so many other people with Lyme who have gotten to know her over the years via the internet (which she is much too sick to use now) care about her, or just care that she is a person who needs help, she now has a chance. A specialist was found in Maryland who has agreed to treat her. It was very difficult to get an appointment with him, but it is booked for next week.

Hotel reservations are made, plans are made. Dozens of people have been working tirelessly to get her to this doctor. The problem is that the only way Elizabeth can travel is by air ambulance or nonstop charter jet. She’s too sick for anything else.

The people working on this tried for months to get a foundation, a celebrity, one of the mega-churches to help. To donate a plane. Nobody was interested.

They approached the charities that fly people for medical care for free, and would you believe, Elizabeth doesn’t meet their requirements, because she’s too sick? For example, one requires that patients be ambulatory and be able to switch planes.

So, I won’t be answering comments or posting blogs for the next few days (although a new — and fun! — post goes up tomorrow that I wrote a few days ago and scheduled to post on Thursday), because I’m hoping by this Sunday, June 19, Elizabeth will be on a plane bound for Maryland, to get the help she’s been seeking for years. Before it’s too late.

Training my service dog is important. Blogging is important. Writing interviews of people with MCS, and writing lesbian erotica and all my other writing is important. But saving a life? I can’t NOT do whatever is in my power to help make that happen.

So, I’m writing this blog.

I’ve also written a press release, which is something I haven’t done in nine years. I had to refresh my memory about how to do it by using internet “how to”s. My brain hurts.

I’ve just received word that the fact-checking is done, so we can start using the release. If you have experience contacting the media (newspapers, magazines, TV shows) and/or you have any media contacts, please get in touch. I could use the help. Here is the press release.

I emptied my PayPal account. I contacted a friend who knows pilots who is in Florida. She is trying to find someone who can donate a plane or their time as a pilot. And I’ll be writing another post, at my other blog, which I hope you will read, too. That will have to wait till after an eye doctor appointment (and recovery time) tomorrow. I’ll post a link when it’s up.

When this is over, and Elizabeth is on the road to recovery, I hope to get a chance to speak to her. I hope she, like me, is able to look back on the time she was dying and be so grateful that things are so different now.

– Sharon, the muse of Gadget, and Barnum (so bored AGAIN! SDiT?)

Tips for Tired Trainers & FB Accessibility?

This is just a quick post to get a sense of where to put my energies. I have been using the new After Gadget FaceBook page (we have over 25 “Likes,” which makes us an official fan page now! Thank you!) for the following:

  • Photo albums — several pictures on a theme that supplement a single picture that’s appeared on the blog. The albums do not contain image descriptions;
  • Brief status updates about something in my day relating to Barnum (a breakthrough in a new skill, a frustration relating to my illness, etc.);
  • Resource documents — a training log, a grief resources list, and a new venture, “Tips for Tired Trainers.”

I like being able to use FB and Twitter to post short celebrations or humorous anecdotes or gripes that don’t warrant an entire blog post. And, because I’ve linked the blog and the FB page to Twitter, announcements of posts and status updates get tweeted with links to the original material.

In terms of the “Tips for Tired Trainers,” I’ve had this idea for several years — a handbook for people with fatiguing illnesses who want to train their own dogs.

But, I have about eight books in my head that may never be completed and published because being sick has made that sort of marathon functionality impossible, so far. Thus, it recently occurred to me that if I can just write one tip a day (or however often I’m able), readers/followers can use the tips as they appear, and the pressure is off me to do it all at once in book format. I can also field questions about tips that aren’t working right when people try them, and use that feedback to tweak the tips. (Tweak the tips that get tweeted?)

I have one concern, however, which is, how accessible is FaceBook? It seems to be a very visually oriented app, and I only know a couple of blind people who use it, which makes me wonder if it’s not that accessible to people who are blind or low vision.

I also know that I couldn’t use FB at all when I had dial-up Internet access. With satellite, I can, but it’s slow and glitchy. However, I also couldn’t really read blogs or use Twitter with dial-up, either.

Here is my two-part question:

1. If I post a status update or document on FaceBook, and you’re following me on Twitter, does the lead-in and link you get tweeted take you to an accessible version of the original? In other words, is what I post on FB accessible to those of you with dial-up or who are blind/low-vision?

2. Is the content I’m posting on FB, especially the Tips for Tired Trainers, of interest to you? If so, and you’re not able to access the FB page, would it make sense to periodically post a compilation of the latest installment of those tips here?

In a nutshell, I am trying to keep my content accessible to as many people as possible, while also respecting my need for conserving energy, and trying not to create so many versions of the same material that it annoys people and takes up your valuable time/energy. (Nobody likes reiterated repetitious redundancies.)

I definitely intend for the grief resources to all be included in the published pages here, but I’ve been trying to pull those together for over a year. Since I work slowly and sporadically, and there are always other topics to write about, I don’t know how long that will take. I decided it was better to post them somewhere, for now, in unvarnished form, than to keep sitting on them.

Thanks very much for your feedback!

-Sharon, the muse of Gadget, and Barnum (all tuckered out from his run at the pond)

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