Archive for the 'MCS' Category

Why Barnum Is No Longer My Service Dog

Hi!

I don’t blog here at After Gadget anymore. I moved to SharonWachsler.com over a year ago, but I still get notices from WordPress telling me that new people have subscribed to After Gadget. This post is for you subscribers to tell you my REALLY BIG NEWS and to invite you to subscribe to my ACTIVE blog, sharonwachsler.com because this blog you’re subscribed to here generally has no new content!

Moving alone: My big news is that I no longer have multiple chemical sensitivity (MCS), and I no longer have chronic fatigue immune dysfunction syndrome/myalgic encephalomyelitis (CFIDS/ME), and I no longer have chronic Lyme disease and coinfections! Thus, I no longer need a service dog! Barnum has been “career changed” to “demo/training/sport dog” as I work my way toward becoming a professional dog trainer.

I am currently interning with two trainers, Caryl-Rose Pofcher and Elise Gouge. I’m learning tons from both of them.

Barnum and I have not started our sport training yet. He has had an ear infection for 16 months (no, that’s not a typo!) which has been treated with everything you can imagine, from ointments to oral antibiotics to acupuncture to full-sedation ear flushes. We think this very nasty chronic infection is due to underlying hypothyroidism (already being treated) and food allergies (which we’re sussing out now). This means that he’s on an eight-week trial of ostrich and quinoa. Although I have found ways to do treats and toys with ostrich and quinoa, it’s incredibly expensive and time-consuming, so I’m waiting to do classes with him till the food situation is easier. We will start introducing new foods into his diet in three weeks and see how he does with them. (Yay!) I already know he’s allergic to chicken. I am really, really hoping he is not allergic to beef, pork, turkey, and/or duck.

If you want to keep up with me and Barnum, or if you want to know how I recovered my health after 18 years of severe, disabling illness, please check out my current website, SharonWachsler.com. That is where I blog now. That’s where I have info about my writing, consulting, dog training, etc. If you want to skip directly to my recovery story, including “before” and “after” pictures and videos, read the post I published a few days ago. If you want to learn more about neuroplasticity and HOW I recovered, visit my page on neuroplasticity and my recovery.

I’ll leave commenting open here for a short time to support ease for readers who are not familiar with my new/current blog, but my strong preference is for you to comment on my new site (so I don’t have to keep logging in and out of two different websites). Thank you so much for your support and interest in my blogging and all-things-dog over the years! I really appreciate all I have learned and continue to learn from you!

Love,

Sharon and Barnum, Former Service Dog

#ADBC Raffle Winners!

Howdy!

Yesterday, I assigned a number to all the bloggers who contributed a post to the 10th Assistance Dog Blog Carnival. (I just gave out numbers from one through thirteen based on what order they posted their blog entry in the comments and edited the comments to include that number.)

Then, last night, I asked Random.org random sequence generator to put the numbers 1 through 13 into random order to choose our winners. Here’s the result:

At the top, in large letters, it says RANDOM.org. Below that in purple is "Random Sequence Generator." Below that it says, "Here is your sequence," and below that is a column of numbers in this order: 13, 9, 8, 2, 12, 7, 10, 6, 3, 1, 5, 4, 11. Below that it says, "Timestamp: 2013-01031 09:21:06 UTC"

Click to embiggen.

The screen shot above is my proof that the giveaway was not rigged. Heh heh heh.

Here’s the order with the names added:

  1. Frida Writes (13)
  2. Martha (9)
  3. Ms. Pawpower (8)
  4. Starre (2)
  5. Sharon (12)
  6. Ro (7)
  7. KHills (10)
  8. Brooke (6)
  9. Flo (3)
  10. Cyndy (1)
  11. L-Squared (5)
  12. Karyn (4)
  13. Patti (11)

Here are the items for raffle:

  • Natural & Unscented Personal Care Travel Kit & Eco Tote (US & Canada) Claimed by Ro!
  • Natural & Fragrance-Free Body Care Bag (US & Canada) Claimed by Starre!
  • Staples Easy Button (US & Canada) Claimed by PawPower!
  • Deer antler dog chew (US & Canada)  Claimed by Martha!
  • A pair of Bark’n Boots (International)  Claimed by Frida Writes!
  • A dog bow tie (continental US only) Claimed by Sharon!
  • I Love My Service Dog cap (International)

To get more details about what each prize includes, plus links and photos, please see the #ADBC 10 Swag post. Since there are seven prizes, we can have seven winners! Here’s how we’ll do it….

The first place winner, Frida Writes, gets first pick. (Congratulations!) Please comment below about which item you want, and the person who donated it will get in touch for your mailing address. Then the second place winner, Martha, gets her pick, and so on. This will be easiest if each winner puts their pick in the comment section below so that everyone can follow along in order. If commenting here is a PITA for you, please tweet me at @aftergadget with your preference.

Note: Some items have geographic restrictions on shipping, so if you live outside the continental United States, please pick accordingly. Also, if you don’t want any of the prizes available to you, please let me know so the next person in the sequence can be given the option.

Happy raffling!

-Sharon, the muse of Gadget, and Barnum, SD

I’m Writing Again

Back before Gadget died, before Barnum was born, before I started blogging, before Lyme disease ravaged my life, I was a writer. And now I am becoming one again, thanks in part to you reading this blog and encouraging me. Thank you!

Back in the Day

Breath and Shadow logo. A circle in tones of brown, peach, and mustard. There is a silhouette of a face that looks like a woman's face breathing out and inside that as a shadow is a second face which seems more like a man's face. Below that are the words Breath & Shadow in white letters.

Disability Literature and Culture

Yes, Virginia, there was writing before blogs. I used to manage and edit Breath & Shadow, a literary journal of disability culture, and I wrote occasional essays and articles (some humor, some disability studies), short stories (usually erotica, though not always), and poems for a variety of paper and online magazines, newsletters, papers, journals, and anthologies. From 1992 through 2006, I slowly built up a writing career. It was a challenge because I was disabled by chronic illness very soon after I graduated from college, so there were many years where getting published at all was a big deal each time it happened.

In January of 2007, I moved house, which I spent months trying to recover from. That summer, I got Lyme disease, which picked up my world and shook it like a snow globe. A lot of the time, my world still whirls around me in chaos. From 2007 through 2010, I did almost no writing. I handed over the reigns of Breath & Shadow to another editor, to whom I’m very grateful. During my most extreme years of illness, I did manage to write a couple of essays — a grueling undertaking — and a very small number of short erotica pieces. I also conducted periodic interviews of activists with multiple chemical sensitivity (MCS) for Our Toxic Times,* the newsletter for the Chemical Injury Information Network. If you have MCS or want to keep abreast of issues relating to environment and health, I highly recommend joining. The newsletter is excellent, and you will be supporting a 501(c)3 nonprofit that puts every penny to good use.

Logo for CIIN -- a merry-go-round pony, blue on white.

MCS: Roller coaster or merry-go-round?

Aside from the interviews, most of the stuff that got published in that time period were pieces that had been written earlier. Some were reprints; others were pieces that were waiting for the right home. And, after Gadget died, in December 2009, I started this blog. Blogging, I discovered, did not require the extremes of care, editing, proofing, and other work I usually put into writing. It offered me some slack that enabled me to continue writing.

“Professional” — or something**

Slowly, in the past two years, I have begun to write professionally again. I’m still hampered by severe swings in my cognitive and physical functioning and by needing to spend so much energy on training Barnum, but I’m managing to pick up a slow, stuttering sort of momentum. I know many of you read this blog because you’re interested in the topic of service dogs, dog training, recovering from loss, and other topics I cover. Others of you have told me you subscribe because you like my writing. I’m preparing for a big writing undertaking (a book, actually), and it would be very helpful to have more readers “follow me” to some of my other writing sites when my book project devours my soul takes over my life becomes the focus of my passion.

I wanted to tell you where else you can read my writing and ask you to subscribe/follow me on those sites, because I don’t generally post here about my writing elsewhere. I have some big projects I’m working toward — I hope to unveil the details about The Book in upcoming months — but meanwhile I need to keep stretching and exercising my writing muscles that are a bit stiff and atrophied from disuse. I would love it if you’d join me in some of my new writing ventures!

Dykes, Dogs, Disability, and . . . Maine?

Here’s where you can find some of my work:

– My writing blog, Bed, Body & Beyond, focuses on life as a writer with disabilities. Although historically I haven’t posted there as often as here, I have been posting there more frequently lately. I also put a lot of care into the posts that appear there. Sometimes a great deal of research and thought goes into a single post, such as this one about the language of disability.

Sharon sits in her powerchair, which is backwards; both Sharon and the chair are facing away from the camera. The chair has a gray seat and wheels, with a cherry-red base. Sharon wears a tan trench-coat, and she is holding it open on both sides, as if she is flashing whoever is in front of her. All that can be seen of Sharon are her naked calves, her feet in four-inch-high patent-leather heels, her hands pulling open the trench-coat, and her head. She is turning her head toward the camera, so her face is in profile, smiling mischievously. Her facial expression is saucy, letting you know that she does not take herself too seriously.

The longest alt tag ever?

Lately I’ve focused more on being an erotica writer, but so far I haven’t actually published anything x-rated on my blog. However, there have been requests for excerpts, so I might start posting some teasers, perhaps focusing on stories with a disabled protagonist (hint for upcoming book project!). Rest assured, if I do post something explicit, I’ll put NSFW (“not safe for work”) in the subject line so people can make an informed decision about whether to read it. Most of the time, so far, material on that site is not remotely explicit.

Recent posts include interviews with editors of books in which my work has appeared in 2012, a discussion on the language associated with disability, some reviews of my work, and pages with blurbs and links to online and book publications. As my work gets published elsewhere (I have essays, fiction, and possibly poetry coming down the pipeline) I’ll post interviews, excerpts, and links. I’d love if you subscribe/follow my writing blog! (Note: This is a Blogger blog, which means that subscribing by RSS is easy for anyone, but subscribing by email requires doing a Captcha [“word verification”]. If Captcha is a barrier for you, please contact me and I will subscribe you. I apologize for the inconvenience.)

An oval with two clasped hands reaching above the words Ability Maine in white letters on a black background that suggests mountains and a green background above the hands.

I’m ba-ack…

– Ability Maine — the website of disability news, views, information, and literature, especially (but not exclusively) with a Maine focus. One example is an interview I did with Arnold Mann, the investigative reporter for Time and USA Weekend who published a fantastic book on corporate and government complicity and coverups of chemical injury.

I’ve also started a blog for Ability Maine — Ability Maine Blog. At the blog I post blurbs and links about new content at the main Ability Maine page as well as its literary journal, Breath & Shadow. I also have started posting short, time-sensitive posts relating to disability news, events, culture or other pieces of interest to the disability community in Maine or around the world. Subscribing to the Ability Maine blog is a great way to read my new writing and found out about information of interest to the disability community. Those are actually *short* blog posts, which is a rarity with me, you know. (Note: This is also a Blogger blog, which means that subscribing by email requires doing a Captcha [“word verification”]. If Captcha is a barrier for you, please contact me and I will subscribe you. I apologize for the inconvenience.)

Outline sketch, black on white, of a dog's head and neck with a leash or harness draped around his shoulders. The profile is of a flop-eared dog like a Lab or Golden.

IAADP logo

Partner’s Forum, the newsletter of the International Association of Assistance Dog Partners (IAADP). I have written occasional articles for PF for many years, usually training tips or equipment ideas. Now I am also helping the editor, Joan Froling, with locating, editing, and writing work on what will hopefully be an ongoing basis! You need to be a member of IAADP — a 501(c)3 nonprofit organization — to get the most recent issues of PF. Anyone is welcome to join. It’s a great way to support and learn about what’s happening in the assistance dog world. Partner members (those partnered with a working assistance dog) also receive additional benefits with membership.

– Amazon.com Listmania — I now have two listmania lists at Amazon of most of my work that’s appeared in books. (Work from magazines and such is more difficult to make available.) One list of books are nonfiction pieces (essays or humor) and the other is lesbian erotic fiction.

– The Chronic Writer(??) — Way back in the day, I wrote a monthly humor column called Sick Humor for Ability Maine. It was an outgrowth of my comic strip by the same name. “A twisted look at life with disability.” When I was invited back to write for Ability Maine, I really wanted to start writing again about the life of a writer with chronic illness, although I wasn’t sure I wanted it to be purely humor/satire. I wanted to do interviews with other writers with disabilities or chronic illness, write about some of the complexities of writing with impaired cognition and limited energy, the politics, the unexpected gifts of writing. I planned to call it The Chronic Writer.

I haven’t yet written an official Chronic Writer piece, although I’ve written lots of partial pieces, and I’ve published pieces at Bed, Body & Beyond and at Ability Maine that could certainly fit under the “Chronic Writer” rubric. My current plan is to move both my blogs (After Gadget and Bed, Body & Beyond) to my sharonwachsler.com domain (which is very, very old and outdated, so I am not linking to it) and launch The Chronic Writer there. That website would be the home for all things Sharon-the-writer-Wachslery and would also allow me more freedom than using Blogger or WordPress freeware (especially as I’ve recently been made aware of an issue with WP Terms of Service). But, it’s been my plan for years to update my domain, so let’s call this a work-in-progress in progress, shall we?

So, that’s my big news. It’s a bit scary to make this announcement as if it’s some done deal, as if I can be relied upon to keep producing. Because if I had a dollar for every time I’ve said, “I’m doing better. I’m starting to write again,” and then discovered that I couldn’t even finish a piece of flash fiction or a blog post . . . I would have made a lot more money than I ever have on anything I’ve published! But that is, after all, the way of the Chronic Writer.

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

*I’m still doing OTT interviews when time and energy permit, so if you are chemically injured, and you are involved in any form of activism, very broadly interpreted, please drop me a line, and we’ll see if you’re a good fit for my series. My goal is to profile one activist from each US state (and then perhaps I’ll move on to US territories and other countries after that).

**My definition of professional writing: getting paid occasional paltry*** sums for huge amounts of work OR getting paid nothing to have your work appear in academic or literary venues. This definition is slightly different if your name is J. K. Rowling or Stephen King.

***I recently got a royalty check for $1.36. That was $1.36 more than I had expected to earn in royalties for the year for that piece!

Product Review: Fragrance-Free Dog Shampoo Bars

As a service dog partner with multiple chemical sensitivity (MCS), I’ve gone through a lot of trial and error in finding a shampoo that I tolerate that also works well for my dogs. This is especially important because whenever I went anywhere, my service dog would go with me, and when we came home, we’d both need to bathe to get fragrance residues off our hair and skin.

The Bad Old Days

The only “all-natural” dog shampoo I found that was supposed to be safe for people with MCS (I bought it from a mail-order business that caters to people with MCS) turned out to be made up of numerous essential oils and reeked to high heaven. Even friends without MCS said it was like a perfume bomb. I can’t imagine someone with MCS using it safely.

I turned to the only other option I could think of — a gentle, fragrance-free human shampoo. This worked okay with Jersey. But when Gadget came along, I discovered that over time the shampoo dried out his coat, stimulating his body to secrete more oils to protect his skin. This led to a dog who had a dry AND oily coat, which caused him to smell very “doggy.” Eventually, I tried mixing fragrance-free human conditioner and shampoo, and that seemed to do the trick: his coat became softer and the oily secretions went away.

Even though these products were better than the toxic and/or fragranced dog shampoos on the market, I wondered how healthy it was for them to eat so much of it (because I gave out a lot of treats to make baths fun, so a lot of snorking treats out of the bath water took place). And sometimes my dogs have not liked the feel or smell of the products.

A Potential New Solution!

Then, a couple of months ago, I learned of fragrance-free dog shampoo bars made by a person with MCS! Barbara’s online store, Baltimore Soaps and More, sells four kinds of dog shampoo bars.

A line of 14 blocks of soap in a variety of colors.

Baltimore soaps and shampoo bars

Barbara was kind enough to send me samples of three of these (she’s out of stock of the fourth, see below), and I tried them out on Barnum.

They were

The first time I used one was to clean Barnum’s beard. Bouvier beards are nasty things. In fact, the Dutch nickname for Bouviers des Flandres is “Vuilbaard” which means “vile beard” or “dirty beard.” I used to use unscented baby wipes to try to clean his beard, but they didn’t work very well, and Barnum was uncooperative because he hated the smell.

The First Test: The Beard

So, to test out the new shampoo bars, I first let Barnum decide which soap he liked best. I held each one up to his nose, one at a time. The goat’s milk one was of no interest — he didn’t move away, but he didn’t move toward it. The oats and honey he moved toward a bit. But the shea butter one he sniffed it, then he moved in to sniff it again, and licked his lips. The clear winner! (Later, when I retested the soaps, he tried to gently take a bite of the shea butter soap.)

Two thick bars of a yellow soap with swirls on the top. The color of lemon meringue pie.

Sadie’s Choice Shampoo Bars

I discovered what worked best was to lather a rag or wash cloth with a bit of the soap and then massage it into his beard, and then once the nastiness had been removed, to rinse the rag free of soap to rinse his beard with. Barnum seemed comfortable and held still for all this, which he usually does not do when I go tugging at and mutchering his beard. The fact that he liked the smell seemed to make a big difference to him. Afterward, his kisses smelled much sweeter (without all that rotten food in his beard)!

The Real Test: The Bath!

I’ve cleaned his beard with Sadie’s Choice a couple of times since then, but the real test was for the total bath, which we did a few weeks ago.

Betsy helps me bathe Barnum. I wasn’t sure how the shampoo bar would go over with her since we’ve always used liquid shampoo before.

We wetted Barnum down with the shower sprayer as usual, and then she started rubbing the bar all over him. After a minute of lathering, Betsy said, “I like this soap much better than the shampoo.”

“Really?” I said. “Why?”

“With this you can hit the spots you need to hit with it,” she gestured to his hindquarters and tail, which she was soaping up. “I always felt like we were using more than we needed with the shampoo. We had to use so much. This is not as wasteful.”

I will add my own observations about the shampoo:

It had a pleasant smell, by which I means practically no smell, but what there was smelled clean and pleasant and not fragrance-y or chemical-y. Even fragrance-free shampoo has more of a smell than this did, to me.

Barnum seemed to like the smell and feel of it better, so he was very happy and cooperative (although the hot dog slices were a major factor, too).

It rinsed off much faster and easier than any other soap/shampoo/conditioner I’ve used on a dog before. It rinsed very clean and easy. I had not expected that.

In the time since that bath, Barnum’s coat has stayed in good condition. It didn’t get oily or smelly like used to happen when I used people shampoo, and it also is not dried out. It is crisp and soft, without a doggy smell, the way a bouv coat should be.

We give Baltimore Soaps and More doggy shampoo bars four paws up!

Barnum inside his crate, lying in "dead bug position," asleep with his head thrown back, all his legs in the air, just letting it all hang out! He is lying on a tan puffy dog bed inside the crate, and there is a red Kong against his butt.

Four Paws UP!

The Interview: Barbara, the Soap Maker

To round off this review, I thought it would be fun to interview Barbara about her soap-making business, her dog shampoo bars, what it’s like to run a small business when you live with MCS, and her life with dogs. Here it is!

Sharon: What gave you the idea to start a soap business? And how do you actually make these soaps and shampoo bars?

Barbara: I have always been a fan of wonderful bath soaps and looked forward to the thrill of opening a new bar. After being chemically injured in 2005 and developing multiple chemical sensitivity (MCS), I quickly realized that my soap options were very limited and it made me a little depressed. I decided to start making my own soaps so that I wouldn’t be stuck with the same boring bars all of the time and figured that there must be other people out there who felt the same way I did!

Sharon: Why do you make soaps and shampoos without fragrances, essential oils, or chemicals?

Barbara: Fragrance oils are bad news for all involved since they are known endocrine disruptors, and the manufacturers aren’t required to disclose ingredients. Tell everyone you know to avoid them! Although some people with MCS tolerate essential oils, if I used them in some of my soap batches, other batches would be cross contaminated due to residue left behind in the molds plus contamination from my hands and contamination during curing and storage. I’ve had soap-making supplies shipped to me where the entire package was fragrance contaminated and unusable so I recommend that people who have sensitivities only purchase soap from a seller who doesn’t use fragrances of any kind in their business or in their home.

Soap is a chemical reaction between fats/oils and lye (sodium hydroxide) that has been dissolved in water. Once the reaction takes place you are left with true soap (as opposed synthetic detergent bars like Dove or Irish Spring) and the lye is used up. Other than lye, no other chemicals are needed for soap making. I tell people that if you are purchasing soap and notice ingredients that aren’t something you would find in your kitchen then don’t buy it because it isn’t a truly natural product. On the same note, avoid buying soap from anyone who doesn’t fully disclose the ingredients on the label.

Sharon: Who is Sadie (of Sadie’s Choice) and why did you name a shampoo after her?

Barbara: I know we aren’t supposed to pick favorites amongst our furry friends but Sadie was THE BEST DOG EVER! Our family rescued her from a shelter four hours away from our home when she was already probably 12 years old, never spayed, infested with fleas, arthritic and had a lump growing on her leg that the shelter staff feared was cancer. I talk about Sadie on my website.

Sharon: Why do you choose the ingredients you do (honey, shea butter, goat’s milk) for dog shampoo?

Barbara: It seems like so many dogs are plagued with skin irritations and so my first goal was to make dog shampoo that didn’t contribute to the problem due to added fragrances. I have made four varieties of dog shampoo bars so far and three of them each have an ingredient known for being soothing for the skin – honey/oats, shea butter, and goat’s milk. I also make a coffee shampoo for dogs because coffee in soap is a natural deodorizer and our current dog had such a funk from her time as a stray that the other bars weren’t enough to remove the odor. The Doggie Deodorizer bar has been very popular which is why I’m currently out of stock! I’m also considering making a dog shampoo with tomato juice for… you guessed it…skunk encounters!

Sharon: I had never heard of dog shampoo bars before I came across your site. Why bars instead of liquids?

Barbara: The eco reasons for shampoo bars include that you aren’t paying for a product that is mostly water and you don’t have any plastic bottle waste. Also, I have found that shampoo bars do a better job of breaking through the oils on the dog’s coat in order to get that first lather going. Simply wet your dog and rub the bar across his/her coat and you will quickly develop a rich, shampoo like lather.

Sharon: What’s it like to run a business when you have MCS?

Barbara: Being a business owner with MCS means that, like with the rest of my life, I spend a lot of time making special requests of people such as not to handle my soap-making supply orders with fragrance on their hands and not to place my vendor spot near anyone selling scented products or running generators or cooking food on grills or gas-powered appliances. I also make all of my business decisions based on my own needs and that of my MCS customers which includes using brown kraft paper with black ink for labels and using mostly brown craft paper and shreds for packaging when shipping orders.

Sharon: Since you make dog shampoo, I’m assuming you have dogs! Can you tell me about them?

Barbara: Our family likes to rescue senior dogs and so we have a fairly high turnover rate. Our current companion is a Jack Russell who lost her way three years ago during a blizzard and had four failed adoptions plus a night in doggie jail before we made her part of our family. We are used to lab mixes and so having a Jack Russell has been quite a change for us. Lucy is a better mouser than our cats!

Sharon: Do your dogs have a favorite shampoo bar? Or do you find that certain bars work better on certain types of coats or breeds?

Barbara: Lucy sleeps on our bed and so I like to bathe her once a month. I find that having a removable shower head on a long hose is a must. She doesn’t seem to have a preference – all of my soaps leave her coat clean, soft and smelling sweet and neutral.

Sharon: I read a mention of rescue dogs on your site. Are you involved in rescue?

Barbara: Since I’m raising two sons my rescue work has been limited to adopting carefully selected dogs who needed homes. Someday I picture myself fostering dogs that need rehabilitation before they can be placed for adoption.

Sharon: I read on your site that you lost two dogs to cancer. Has that experience affected your business or other parts of your life?

Barbara: Our family has lost three dogs to cancer in the past 12 years. When we adopted Sadie, some of our friends and even the workers at the shelter asked us why we would put our older son (our second son hadn’t been born yet) through possibly losing a dog soon after adoption? In our minds, we felt that showing him that a dog deserves a good home no matter how few days she may have left was an important lesson in compassion. Sadie ended up living for two years and four months after her placement with us. She was a joy for each day we had her as part of our family.

Sharon: Can people use your dog shampoo bars? I’m kind of tempted to try out that honey and oats one on myself, just for fun! Is there any reason I shouldn’t?

Barbara: Sure you can, and I won’t tell anyone! My dog shampoo bars are made of the same type of ingredients as my human bars. I would recommend trying it out BEFORE it gets covered in dog hair though.

Sharon: Do people ever ask you for dog shampoos that contain flea or tick chemicals? If so, what do you tell them?

Barbara: No one has so far. At vendor events I have a banner above my booth that reads, “Perfume Free Natural Soap” and I tell everyone who approaches that I don’t use any perfumes, dyes, or essential oils in my bars. I have, however, had numerous people ask, “But then what do you SCENT them with?”

Two bars of soap that look like slices of chocolate orange cake: a half-orange slice on top of a white frosting-looking layer on top of an orange layer between two dark chocolate-colored layers.

Chocolate Orange Soap

Sharon: Do you have some sort of culinary background? Many soaps look good enough to eat. (It makes me hungry to look at them. I have to keep reminding myself that these are not food, they are soap. Which makes me similar to my second service dog, Gadget, who was fond of eating bars of olive oil soap.)

Barbara: Thanks for the compliment. I am an experienced cook and find a lot of inspiration for my soaps from the food world.

Sharon: Anything else you’d like to add?

Barbara: Make sure you store your natural soaps in a well draining soap dish and not in the path of the shower spray in order to prolong their life. Also, one thing folks may not know is that due to curing time it takes at least a month to make each bar of soap.

Sharon: Thank you for your time!

– Sharon, the muse of Gadget (who liked to eat soap, even if it didn’t look like food!), and Barnum, relatively clean SD/SDiT

Public Comments to the National Council on Disability

I was asked by Mary Lamielle of the National Center for Environmental Health Strategies (NCEHS) to call in with testimony to the National Council on Disability (NCD) during their public comment period today, Thursday, July 26.

What is NCD?

NCD is a small, independent federal agency charged with advising the President, Congress, and other federal agencies regarding policies, programs, practices, and procedures that affect people with disabilities. NCD is comprised of a team of fifteen Senate-confirmed Presidential appointees, an Executive Director appointed by the Chairman, and eleven, full-time professional staff.

In its invitation for public comment, NCD noted:

NCD will accept statements on any topic but is particularly interested in discovering what the public believes should be included in NCD’s 2013 statutorily mandated Progress Report to the President and Congress. Individuals interested in submitting public comments may do so in-person or by phone and should provide their names, organizational affiliations, if any, and limit comments to three minutes. Individuals may also submit public comments in writing to PublicComment@ncd.gov using the subject “Public Comment.”

Mary had previously emailed me to ask me to sign on to the recommendations she was circulating in the disability and multiple chemical sensitivity (MCS) community for the NCD’s meeting. These recommendations, which I support, are as follows:

1. The NCD should play an active role in organizing and participating in an Interagency Committee on Chemical Sensitivities;
2. The NCD should examine the significant levels of harassment and discrimination experienced by those with chemical and electrical sensitivities in housing, employment, education, healthcare, medical services, and daily life;
3. The NCD should support federal research on chemical and electrical sensitivities;
4. The NCD should adopt the CDC Fragrance-Free Policy;
5. The NCD should adopt a fragrance-free and healthy, accessible meeting policy similar to that of the Access Board; the NCD should also adopt a policy to limit exposure to electrical devices and frequencies at NCD meetings; and
6. The NCD should support the addition of a Board member with expertise on chemical and electrical sensitivities.

Here is what I will be saying in my public comment by telephone later this afternoon:

My name is Sharon Wachsler. I have multiple disabilities, and I’ve found that not all my disabilities are treated equally even within the disability community. I’m generally able to use my service dog, my powerchair, and a sign language interpreter or the relay without any problems. But when it comes to my access needs stemming from multiple chemical sensitivity, there are always problems. Every year I had to fight my CIL to get a fragrance-free nurse for my annual PCA evaluation. There are no hospitals or doctor’s, speech-language pathologist’s, psychotherapist’s, or CIL offices accessible to me.

I have a close friend who is Deafblind and a lifelong wheelchair user. She has told me on many occasions that having MCS is the worst of her disabilities. She has given up trying to work with case managers, assistive tech providers, and other disability organizations because they do not listen or abide by her needs for products and services that won’t make her severely ill and cause her other disabilities to worsen.

When we had an ice storm in Massachusetts in December 2008, and I had no heat, power, water, or phone for a week, I couldn’t be evacuated; there were no MCS-accessible shelters. Two friends who have MCS were also stranded. One of them suffered hypothermia. The other ended up in the hospital which caused such damage to her health that she was in chronic respiratory arrest for two years afterwards.

Just last week a woman with MCS called me about trouble getting workplace accommodations. I referred her to the DOJ ADA hotline. She said she’d already called and been told, “That’s not an ADA issue. It’s a building maintenance issue.” How many other people with MCS have called the hotline and been told that their access needs aren’t real?

I have stories like this for every day of the year. It is for these reasons that I urge you to implement the six recommendations proposed by Mary Lamielle of the National Center for Environmental Health Strategies.

We are not separate from you. We are a part of the disability community. Our needs must be heard, respected, and accommodated.

If you would like to support the efforts of the MCS community to have our issues included by NCD, please email your comments to PublicComment@ncd.gov and put “Public Comment” in the subject line. Please also send a copy of your comments to marylamielle@ncehs.org. They’re accepting public comments by phone on Thursday and Friday, but if you can’t get your comment email sent by Friday, just send it when you’re able.

If you’re not sure what to say, you can talk about your experience with MCS or electrical sensitivity or that of friends, family members, colleagues — or me! No matter what you say — even if you say nothing else — you can copy in the six recommendations of NCEHS above and indicate your support of them.

Thank you very much for your support!

– Sharon, the muse of Gadget (who had chemical sensitivities), and Barnum SD/SDiT (and blessedly healthy so far)

REPRISE life w/lyme, mcs, cfids: a different kind of typical atypical

This post is for the June Disability Blog Carnival at never that easy. The topic is “Arbitrary” — anything on disability you want people to read. I chose to reprint a post that I wrote in May of 2011, with this new introduction. May is both Lyme Awareness Month and MCS Awareness month, and I was trying to blog a lot on both illnesses that month.

The reason I chose this post is that it’s not at all like my typical posts. As an editor and proofreader, I usually try to have “clean” posts — proper capitalization, punctuation, grammar, and spelling. In this post, not only did I not conform to standards, I actually stopped myself from backspacing to eliminate errors, something I normally do a great deal. I didn’t do this to be annoying. I did it for two reasons, and I’m reposting it for a third.

One reason is that when you’re severely in pain and exhausted, things like holding the “shift” key and another key at the same time to create a capital letter, or needing to take a hand off the keyboard to move the cursor and then get that hand back on the keyboard to correct an error, can be too darn hard. That effort often keeps me from writing. I really wanted to blog that day, and I didn’t want my pain and illness to stop me. This was me saying, “Fuck you,” to my limitations, and to the tyranny of internalized ableism.

The second reason is that I do a great job of “passing,” especially in written form, around my cognitive impairment. People who are not part of my day-to-day don’t understand — and often, really, don’t seem to believe — the amount of cognitive impairment I have. Being basically smart, well-educated, and articulate, I have more to fall back on than someone who didn’t have these benefits. Also, there are tools like spell-check and grammar-check, both of which I use. I usually reread a post, sometimes several times, to fix errors, and I do a lot of backspacing to fix errors I find in previous sentences.

However, the biggest toll that my disabilities take on my blogging is in volume, frequency, and organization. I tend to write really long posts, and that’s often because I can’t keep track of what I’ve already said. I often make the same point repeatedly because I’ve forgotten that I’ve already made it. I start posts, run out of spoons, plan to finish them another time, and then never do — because I’m too sick. Because I’ve forgotten the point of what I wanted to say. Because I’ve written another post on a similar theme, forgetting that I already had something written on that topic. Because the content is no longer topical. I have approximately a hundred partial posts in my drafts bin here. Of course, my readers don’t see all these failed efforts because I don’t post them!

The third comment is for all the writers and other language snobs out there, of whom I am one! I am a total “wordie” (as food is to foodies, words are to wordies — or logophile, if you prefer), a grammar geek, a punctuation nerd. I make no apologies for this. AND, there is a difference between enjoying and finding pleasure in well-written prose, in praising readability, and looking down on people who make errors or who don’t know a lot of the basic rules of grammar, punctuation, and spelling. As a writer, I have a lot of online friends who are writers, especially on Twitter. I can’t tell you how many times I read snotty comments about people who write in all lowercase or people who misspell or whatnot. I wanted to reprint the post below to say, “Hey! There are sometimes good reasons why a person might not use the shift key. There are physical and cognitive disabilities that might make following basic rules of grammar onerous or even impossible. Check your ableism at the door, please! We still may have something worthwhile to say.” I believe the post below does have something worthwhile to say, both because and in spite of the copious language errors.

– Sharon

for an MCS, Lymie, CFIDSer blogger training her own service dog.

i’ve been trying to post every day, partly bec i have so much to say and partly bec my stats go way up when i do, and that’s just so reinforcing!

but when u have lyme and cfids and u overdo by blogging, tweeting, posting on FB, etc., and/or train your dog, then u crash.

this is the other side of the typical atypical day coin. a typical day when i’m super super sick, which is not my typical day anymore.

today is not quite a stuck day but it’s damn close. it’s the kind of day that often follows a good day, like the ones i wrote about yesterday and the day before.

can’t get out of bed (move legs) on my own/transfer/go to bathroom, feed myself, brush teeth, etc.  also can’t speak.

this used to be my typical day, when my lyme was bad. now it’s what happens if i overdo or have chem exposures or don’t get enough sleep, and i have done some of all of that in the past week. then i way overdid it and shaved barnum down last nite w/betsy. i knew i was ovverdoing, as the pain and jelly legs and vertigo set in during and after, but the ticks have  been so bad, it needed doing and this was the only time, so i just hoped i could bounce back.

so i was long overdue for a slapdown. and here i am blogging, which i shdn’t be.

but i have a lightweight cordless keyboard in my lap, my elbows bolstered, and reclining. i can’t lift a  fork of watermelon into my mouth, but i can type.

i can’t say, “blog,” but i can type.

i’m blogging because it’s hard to be stuck in ur brain, unable to speak, surrounded by people who don’t know asl, in pain, etc. i’m blogging because i want you to know what it’s like to have these illnesses, which you never will as long as i blog because that gives a fall sense of how functional i am. the act of blogging belies that i’m too sick to blog.

but i want you to  see wha hppens on the days i don’t blog,or i do but i shdn’t. in fact, when i was writing this i kept abbrev and making typos and fixing it but i have decided now as i finish this up (have  done several sessions w/rest between,jumping around) to leave them bec its so much harder for me if i have to move my fingers off asdf  jkl;

i have already fixed so many typos, so many wrong word choices because my brain doesn’t always connect to what my fingers are typing (e.g., if i think “taller” and right “father”). it’s so hard fo rme to leave the errors — i keep fixing them! – but i want u to see the reality.

my pca fed me watermelon and my protein drink, which we did in shifts, over sevaral hours — it is exhausting bec of chewin g and swallowing, bec if she doesn’t put it right directly into my mouth w/out pausing or waiting for me to make minute stretches forward, it’s even more exhausting. and i can’t tell how to do it diff bec i can’t  talk and it’s too exhausting to try to explain bec nobody who has ever fed me has understood these nuances anyway.

and typing or swallowing or chewing gives me palpitations, makes me dizzy, makes me pant. and breathing becomes more of an effort — the diaphragm moving, the rsise and fall of chest, those are all muscles working.

this is lyme and mcs awareness, too (and  cfids, even if it’s not cfids awaereness month)  — the days when u can’t do most things at all and what u do is a huge struggle. this is so much better than what used to be a typical day, where i wdn’t be able to write this blog at all. when i couldn’t  move my hands sometimes. today i can flop them around a bit, i can click, and i can type , as long as my arms are supported.

being a lyme survivor who is also an assistance dog trainer means overdoing it to try to protect barnum and myself from ticks, from further infection, which means making myself sick, doing too much.

these reminders are good for me because last night in the glow of my overfunctioning adrenaline rush, i thought, ” i really don’t need to be teaching barnum to shut and open cupboards or the fridge or all sorts of other skills i’m planning because i’m doing so well now. but it’s better if he’s overtrained just in case.”

then, today, i needed to pee, and my pca was shopping, and i wished so much that barnum knew how to help me with transfers. and he needed to pee, and i couldn’t let him out, and i wished he knew already how to open and shut doors on cue. but not yet. so we waited 45 mins for my pca to get back.

and i ran out of toilet paper after my pca left, and i knew it was in the cupboard five feet away, but barnum doesn’t yet know how to open and retrieve things from cupboards, and there it is — skills i want to teach for the days i need them, all while hoping i never need them, some part of me believing i will never need them and some part of me remembering all the things i needed gadget to do, some of which i’d trained him for and some of which i hadn’t, when i got lyme. reminding me that i can never trust that i will never  have a day liek that (liek this) again.

he did something interesting today. my pca came in and asked him if he wanted to go for a walk, and instead of bouncing around all happy and heading right fo rthe door like usual, he just looked over at me, which was odd. and i thought, does he know i’m sick, and he’s weighing how much he wants this walk against worrying about me?

i don’t know. i could be projecting. but i’ve never seen that before. sure as heck gadget would  never have done that! but barnum is a very sensitive guy, so i’m not sure.

unfortunately, the nurse had to come today to change my dressing. we were supposed to do a blood draw, but i guess even my blood is too exhausted to move because we couldn’t get blood return.

having CFIDS means i’m too exhausted to have facial expression, so i look like i’m angry or don’t care, when really my facial muscles are too tired and weak.

having lyme means i’m in so much pain that i can’t move 90% of my body because the pain and weakness just takes away my ability to move. it’s hard to get this across:

the nurse (photos below) said, “ur in a lot of pain, huh?” and i nodded, and she said, “u haven’t taken your pain meds today?” and i moved my mask so she could read my lips and said/mouthed, “no i did take them, that’s how come i’m able to be out here” (not in bed), but i don’t know if she understood me bec sometimes when people don’t understand they just nod and act like they do bec they don’t want to make u repeat.

but i always desperately want to be heard and understood, so i signed, “understand?” but of course she doesn’t know asl, but she nodded, so i have no idea if she understood my question.

Barnum lies on a black yoga mat next to Sharon, who is in her powerchair with the back reclined all the way and her feet slid off the footplate. She's wearing a large white mask covering all of her face but from her eyes up. One arm is hanging over the side of the armrest, the other is outstretched on the table where a nurse in a medical mask and gloves is changing Sharon's PICC line dressing.
Nurse visit

i sepnt most of the appt w/my eyees shut and reclining as much as i could, but of course i also wanted to use it as training oppty so i clicked and dropped cheese onto barnum’s mat, but then that was too exhausting so my pca stood in front of mat and dopped cheese after i clicked. i have a box clicker with a light touch.

having MCS makes nurse visits a really big deal. u might notice i’m wearing a mask and a black air  filter on a cord around my neck. that’s because even tho my nurse tries to be fragrance free, she lives with people who use fragrance, so it gets on her. and she sees other patients in their fragranced homes. after she leaves, the whole house reeks, and we keep all the doors shut we can so it doesn’t get into the bathrooms or my bedroom. she sits on a wood chair, never on the sofa or putting her stuff on the sofa, because it would absorb the smells. and i can’t let her into my room bec she would contaminate it, and i need a place i can rest and breathe.

now my pca has brought me “lunch” even tho it’s evening bec i forgot to talk to her abt food until the end of her shift, bec i’m so out of it, and now she’s gone and i’m doing better but not well enough to really be able to food myself, so i try to prop the plate on my chest and overbed table and eat with my fingers a few pieces then put plate on bed and rest.

barnum was on my bed, which he’s not supposed to be when i’m eating. the rule is he gets ignored while i’m eating unless i ask him to do something or he alerts to something, but i have no way to tell him to get off, so i just let him be there. besides, it feels comforting. but this is another reason why i am not the consistent trainer i  wld want to be: sometimes i’m not able to be consistent. i know what i’m doing wrong and there’s nothing i can do about it.

i just realized something. i want u to know this bec it’s  important.

i don’t want u to feel sorry for me. i hate pity, honestly. I want to be KNOWN.

because actually,in this moment  i’m happy. maybe that sounds  hard to believe, but really, despite being so sick today, it’s not a bad day. i’m enjoying watching and listening to the birds ouside my window (have a blog post i’ve been working on about birdwatching and lots of photos.)

i feel content. the pain is not as bad now. i have had help mos to fthe time i needed it today and my night pca will be here later.  barnum has been adorable and actually did a few desirable behaviors. i’mnothaving bad payback (reaction) from the nurse visit exposures, partly bec i have all the windows open bec it’s warm today.  a barred owl has started its strange call (they are active during the day – strange birds).

i feel satisfied and glad i was able to do this blog.

i got to listen to a  phone call  (it’s a class — NVC — and i couldn’t say much but i was included, nonetheless; theyh’re my community, everyone else is chronically ill, and i can just listen and be part of it and know i have companionship). i got to tell a friend i love her.

and iknow this will pass. this is my body wisely saying, “sharon! chill the fuck out! stop doing so much! lie around and do nothing! stop thinking! stop training! stop  blogging! stop tweeting! rest and sleep as much as u can. dammit.” after i post this, that’s what i’ll do. because lyme and mcs (and cfids) awareness means people knowing that those of us who enter thepublic sphere in any form, including internet, are making a CHOICE to do that and not do other things, or to suffer physically as a result.

and it means trusting u all, which i do, ur wonderful, to still be there when i get back when i am not posting everyday and trying to be someone i’m not, someone who doesn’t have cfids, lyme, and mcs. and trusting u to know that i love ur comments, but it’s an effort to reply to them, bec that takes work so if i’m slow or don’t reply, that is why. because i have cfids and lyme and mcs. i treasure them. i smile with almost every one.  my heart is full, thanks to ur support and sue eh’s support and barnum and others.

the migraine is setting in now; my body is pissed that i’m not heeding its call. do me a favor, will u? pls post and fwd this link to everyone you think could stand to know about lyme, cfids, and/or mcs. because i’m not up to it, and i know you get it now, because you’ve  seen me at both ends of my spectrum. thank you.

this is me. radio silence.

love,

sharon, the muse of gadget, and barnum, quietly concerned sdit

Feeding Two (or Twenty?) Birds with One Hand

Some twenty years ago, my friend Linda introduced me to the expression, “Feeding two birds with one hand.” I really like this expression. Not only is it kinder than “killing two birds with one stone,” but it’s more evocative. I can actually picture holding my hand out, full of bird seed, and having two birds land on it, whereas not only do I have no desire to imagine killing two birds with a stone, I really don’t know how you’d go about it if you wanted to.

So today’s post is about what I’ve been doing when I’m not here posting, and how this is an opportunity to bring diverse aspects of my life together and feed multiple birds — after all, I have two hands, so I should be able to feed at least four birds!

Many of my faithful readers know that over the last three months I have been working on a fundraiser for my Nonviolent Communication (NVC) teacher, Marlena. Marlena’s Teaching Fund takes the form of an online auction, which starts right this very instant coffee!

Bird 1 – Connection & Contribution

What’s great about this auction? It gives me an opportunity to give back and contribute in a meaningful way to someone who has made a huge difference in my life.

I’ve also gotten to “meet” a lot of wonderful people — friends of Marlena’s or friends of my NVC friends — who donated items to the auction. It feels good to be part of something where people are coming together in a spirit of generosity and love. Nothing to be sad about there!

Picture of a mourning dove on snowy, pebbly ground with lots of sunflower seed hulls around it.

It may be called a "mourning dove," but I was happy to get this picture of it looking at me.

Bird 2 – Increasing Access to Fragrance-Free & Nontoxic Products

Some of my most commented-upon posts here at After Gadget have been those in which I’ve discussed my MCS and/or how fragranced products affect me. Many of you, my beloved readers, have gone in search of nontoxic, fragrance-free products — for your own health, for the access and safety of those with chemical sensitivities around you, and in solidarity with me. This has been so surprising and touching for me!

I also know that many of you have limited budgets, maybe not much access to trying out different products, or live outside the US, which sometimes means different brands than I know about. I am pleased to announce that there are several small, family owned businesses (many of them owned and run by people with MCS) that make nontoxic, fragrance-free products who have donated products or gift certificates to Marlena’s auction! Some of them will ship outside the US! You can test out MCS-safer products while also helping out an MCSer! Check out these listings! (For those who want an inexpensive way to test out several fragrance-free products, I suggest the Magick Botanicals trial/travel kit.)

Hairy woodpecker pecking at suet in a suet feeder on  small tree.

Hunting and pecking for the safe products in the scented aisles of a store? That can get downright hairy!

Bird 3 – Simplifying & Digging Out

I have too much stuff. My house is full of stuff! Stuff collects dust and mold and dander, all of which I’m allergic to. It gets in the way and leaves less room to maneuver my chair. But some of this stuff is perfectly good stuff. Stuff I can’t use, but that someone else could enjoy — brand-new books I was given but can’t read because I can’t read print books. Snarky posters I got as freebies when the company I ordered from messed up my order. Unused nontoxic/natural lip balm with peppermint oil in it. Inkjet office supplies I bought, forgetting that I now have a laser printer. It will feel great if I can give this stuff a new home.

Male red-bellied woodpecker digs suet out of a feeder with his long open beak.

This red-bellied woodpecker is chipping away at the fat, digging out. Inspiring!

Bird 4 – Bird Feeder as Blog Fodder?

I’m never short on ideas for blogs. In fact, my “Posts” folder has almost as many drafts as published posts, and that doesn’t even include all the posts I have in my head that I want to write! Still, now that I’m doing something with a deadline (the auction is only up for ten days), something I’ve invested so much time and energy in, something that’s so important to me, it pushes me to crank out a post to share with the world.

This gives me opportunities, such as to use several of my recent winter bird photos without writing the perfect Birding Thursday post.

I can carry myself with pride . . .

Tote bag in black and yellow that says Pride in big yellow letters on a black background.

This snazzy tote bag is made from recycled bird seed bags!

in taking an old idea like a signal boost and creatively transforming it into something new and different.

Colorful tote bag made from bird seed bags, includes a bright red cardinal sitting on a branch, and a sunflower at the base of the bag.

This tote bag is also upcycled from bird seed bags.

To think outside the box as a blogger . . .

Top of treasure box has head and shoulders of a brown hawk with red wings. There are feathers on teh side of the box.

This is quite some outside of a box!

can give me several different perspectives on something, depending on how I look at it.

A fabric-covered box. The top shows a blue jay in a green leafy tree with a blue feather attached to it, and the side shows a gorgeous white ibis about to take off over stormy waters.

Or how it looks at me....

It’s true that the tone of this post has been tongue-in-cheek and my objective transparent. Nonetheless, I am still appreciative of the seed Linda planted all those years ago of this kinder, gentler way to speak and act, which is part of the work of NVC, for me.

Especially because Linda remains one of my nearest and dearest friends. She’s the one who told me about Marlena’s NVC classes. Taking them together has deepened and strengthened our friendship. Maybe one of you will get to meet her, too?

– Sharon, the muse of Gadget, and a bored and demanding Barnum, SD/SDiT/hindrance dog

Update: Illness, Writing, Not Much Training

Howdy.

This is possibly the longest time I’ve gone without posting since the early months of this blog. There have been a confluence of events that have brought about this non-postingness.

One is, and I know this will come as a total shocker to those of you who follow my blog, I’ve been really sick. For realz! What with all my chronic illnesses, you’d think this wouldn’t surprise me, but it still kinda does. The issue is that I have been sicker, overall, since Octoberish, with some periods of being much sicker and/or much longer than usual. Every once in a while, I have an “up” day, and I think, “Huzzah! The suckiness hath lifted!” But nay, ’tis not so. The form changes, but the suckiness continueth. For the last couple of weeks, the major issue has been migraines every day.

This is really the first time since my Lyme treatment started to work, around spring 2009, that I have plateaued or dipped and not made a comeback eventually. My doctor and I are not sure what to make of this. A reinfection? An undiagnosed coinfection? A resurgence of babesia (which we had to stop treating because my liver couldn’t handle the antimalarial drugs required)? Or some of the drugs have stopped working? Or are one of the drugs making me sick?

It could also be an MCS thing — foods I’m reacting to that I’m not aware of. Inhalant allergies could have gotten worse, like dust and mold. Maybe there’s some sort of outdoor pollution occurring that I don’t know about that’s doing me in? The most frightening specter of all — could I be allergic to Barnum? I just can’t even deal with the hideousness of that proposition. I was allergic to my cat for years, not knowing he was the cause of my round-the-clock migraines. This worries me.

But all is not gloom and doom. There are good things going on, too. I’ve been working away at helping to organize the fundraising auction for Marlena, my NVC teacher. I’ve learned a lot, and it’s given me an excuse to interact more with some of my fellow students. (BTW, if you want to donate something and you haven’t yet, you have about ten days to get me the info.)

I also have written two long pieces. One is an essay for a really kick-butt anthology on intersections of oppression in feminism (most of the pieces are primarily about race/racism in feminism; mine is mostly about ableism in the feminist movement). The other writing project was a long, complex piece of erotica that was inspired by a documentary I watched on Frida Kahlo. And I’m hoping, if I hear back from various editors in time, and if I’m functional enough, to get in a few more submissions — work that is already done and just looking for a home. (This time of year seems to be heavy with deadlines; I don’t know why, but it always is.)

After I got these two pieces in, I found out that a book that was coming out that I thought had my work in it does not actually have my work in it. My story was accepted by the editor, but when it went to the publisher, they cut it. Normally, I’d have heard months ago, but the editor’s computer got hacked, so her email informing me never got to me. I found it out when I saw my name was not listed on the back cover of the book! It doesn’t happen often, this editor-says-yes-publisher-says-no, but when it does, it really bites. It feels like you’ve been sucker-punched: “You’re in! You’ll get published. You’ll get paid.” Then several months later, “Oh, by the way, the publisher hates your piece (cuz, although nobody says it, they don’t think it’s ‘marketable.’) Sorry!”

But that’s just a blip. The really big problem with writing is that when I write, I can’t do anything else. I can’t train with Barnum. I can’t talk on the phone to friends. I can’t blog. I went more than two weeks without bathing to get the short story done by the deadline extension the editor gave me. And I have to push myself beyond my total physical and mental breaking point to do it.

So, why do I do it? Well, partly because sometimes, when I write, I feel ridiculously happy and connected to myself and some sense of purpose that I never have in any other part of my life. Some of it is that usually these writing gigs pay something (paltry as it might be, and believe me, it’s generally quite paltry), and I have very expensive illnesses, and I worry about spending more (on supplements and air filters and house maintenance and my Lyme doctor who isn’t covered by insurance) than I am bringing in. So, this is a feeble attempt to put my finger in that dam. Some of it is that I just don’t know who I would be if I wasn’t a writer. I think I wouldn’t be me, anymore.

And, along those lines, I am working out a plan with the folks at AbilityMaine to return there as a staff writer. I’m really excited about this. It feels weird because Norm, my dear friend who died three years ago, founded AbilityMaine. So, it took some adjusting to the idea of working there without him, and I sort of flopped around undecidedly for a while. But I do know Norm would be very happy that AM is still in existence, and he was the biggest booster of my writing of anyone I’ve known, so I’m sure he would be happy for me to return. It’s just . . . odd. I will fill you in as developments, er, develop. And meanwhile you should start reading AbilityMaine so you can bask in its fabulousness.

Also, Breath & Shadow, the literary journal I founded, was an outgrowth of AM, and I might be writing for them, too. Again, we’re still not sure exactly how this will all shake out, but if you don’t read Breath & Shadow, you really should, because it’s been in the excellent hands of Chris Kuell since I left in 2007.

One great thing about writing for AbilityMaine is that I will once again get to be a free agent! I won’t be constrained by the whims of the publishing world’s ableism and other bullshittery. As long as I know what the parameters are of what they’re looking for, if the writing is good, it’ll get published. This is such a rare and wonderful and almost-unheard-of-thing in the writing world, I’m incredibly grateful for the opportunity.

Where is Barnum in all this, you may wonder? Mostly on my bed, leaving big piles of dirt and dog-hair tumbleweeds in his wake. His coat is really long now, and he does look gorgeous as long as we can keep up with the grooming (which is a bear!). The good part about me being so consumed in my writing is that he is extremely eager for my attention when I have it to spare (or even when I don’t). So, he’s been extra cuddly, and he’s also very into training on the occasions I’m up to it.

Primarily, we are working on generalizing and learning the cue for turning on and off lights, generalizing and learning the cue for pulling doors shut (as opposed to nudging them shut or pulling them open), and adding some “attention seeking behavior/alert” to his “go find person” skill. (More about that last one in a separate post.) We’re also working a little bit every day on handling/grooming, such as keeping his mouth still with my fingers or a toothbrush inside, allowing grooming of the “sensitive bits” of his coat, recall, fetch, and working retrieve.

This Monday, February 27, will be our two-year Gotcha Day anniversary! Can you believe it? I haven’t decided what I’d like to do for it. I really want to do a photo essay or video of all the things he’s learned in two years, but between technical difficulties and extremely low energy, I think that’s unlikely. But, I am very proud of him.

Good night all. Hope to post on or before our Gotcha Day.

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

Seeking Auction Donations

I’ve written occasionally here and at my other blogs about my study of Nonviolent Communication (NVC) for the last year-and-a-half. I’ve written here about NVC being the major factor in being able to grieve Gadget, and spending the Jewish New Year with my NVC friends, and on how NVC has changed how I communicate about grief. I’ve blogged about it much less than I have wanted to, however. Partly, this is for the usual reasons I blog less about everything than I want or expect to — I’m sick, I’m training my own service dog, I trying to write when able.

But there are other reasons. One is that since that life-changing international NVC phone call at the beginning of October, I am trying to attend as many NVC practice groups and classes as I can. (Note: Whenever I refer to attending NVC classes, they are always by telephone — conference calls.) Although this has absorbed energy — the time spent on the calls and then the time recovering — they give me so much. I feel a new sense of peace, calm, and happiness and an ability to have compassion for myself and others that I didn’t have before.

I actually had wanted to take NVC classes several years ago, but they were offered in a space that was up a flight of stairs and not MCS-accessible. Then I found an NVC teacher who has created an option for NVC classes that are financially and physically, mentally, and emotionally accessible to people with disabilities.

Meet Marlena

The person most responsible for this change in my life is my NVC teacher, Marlena Willis. Marlena lives with both mental health disabilities and physical disabilities, including MCS. A couple of years ago, she decided to offer NVC teleclasses to people with chronic illnesses and disabilities. We became a tight-knit community, most of us living with multiple disabilities, often homebound, and struggling with very difficult situations.

Read what Marlena’s students say about how her classes have changed our lives.

Because she wanted to make sure that anyone who wanted to learn could attend, Marlena offered the classes on a sliding scale and said that nobody would be turned away for lack of funds. Most of us have been able to pay little — much, much less than what Marlena’s time and skill are worth to us — and some have been unable to spare anything for tuition.

Marlena laying on her back in bed. A black-and-tan short-haired large-breed older puppy -- maybe part Doberman or Rottweiler -- wearing a pink collar is licking her from her chin to her eyebrow. Marlena's eyes are closed and her hand rests on the dog's chest.

Marlena's dog loves her as much as her students do!

In the last few months, Marlena has entered financial crisis. This was the result of several unexpected medical expenses not covered by Medicare or MediCal, plus the unexpected expenses of her rescued dog and cat, who are very important to her mental health. For this reason, Marlena’s students are doing a fundraiser for her, which I’m organizing. We are doing it as an online auction. I would so much appreciate your help in making Marlena’s Teaching Fund auction a success so that Marlena can get the dental work done that she needs and continue to teach the NVC classes that mean so much to me and my dear friends.

Find out more about Marlena (my interview with her) here.

If you would enjoy contributing to the success of the auction, here are some ways to help!

  • Donate an item to auction. This is the most useful and important thing we need right now. It can be any item, product, or service that someone else would enjoy. Even if you think you don’t have much to offer, you probably do! I have more notes about this below. Please keep reading!
  • Spread the word! Follow me on Twitter at @aftergadget and retweet my auction-related tweets, or share my posts on your Facebook page.
  • Ask friends, family, social or business networks to donate an item. Do you know someone who has a business, either online, like an etsy shop, or anything else, who would appreciate some publicity while giving something small that will make a big difference in someone’s life? Ask them to donate a service or item.
  • “Like” the Marlena’s Teaching Fund Facebook page! Before the auction starts, we can use it to organize and gather info on items to be auctioned. When the fundraiser is underway, we’ll use it to post updates or feature certain items or list quotes from how Marlena has changed lives.
  • Link to this post. Offer a signal boost. You also have my permission to cross-post this post as long as you attribute it to me and link back here. And you’ll probably want to write some sort of introduction so people know you’re not me!

What Items Can Be Auctioned?

All sorts of things! They can be tangible goods or they can be services. Below are some categories of things we can really use.

  • Unique or beautiful things: Jewelry, photos, artwork, hand-crafted items, specialty or homemade foods (that travel well), films, music, or books donated and signed by the artist/author, tickets to sports/theater/exhibits.
  • Useful things: Dog or cat toys or products, clothing, housewares (kitchen, bath, bed, etc.), hair combs or sticks, hobby/recreation stuff (knitting, crocheting, photography, games, gardening), posters, cards, gift certificates for anything/anywhere! (Did you get something for your birthday or the holidays that’s perfectly good, but that you just can’t use?)
  • Items of interest to ill or disabled people: Unopened supplement bottles, books on living with chronic illness, disability culture or humor, massage or body work, meditation or yoga instruction (live or on CD or DVD), assistance dog gear or lifestyle stuff, videos educating others about your illness or disability rights.
  • Items of interest to NVC people: NVC books, CDs, or DVDs; BayNVC merchandise; giraffe things (puppets, ears, jewelry, prints, bags, decor); empathy session; coupon/gift certificate for a free workshop or class.
  • Services: The sky is the limit! If you have a skill or passion, chances are someone is interested in learning from you or taking you up on your talents. Editing/proofreading; writing; graphic design; cupcake decoration; astrology; Tarot reading; NVC empathy session; dog training (in person or by Skype); photographing your pet or food styling; bicycle, wheelchair, or car repair or maintenance skills; counseling; gluten-free cooking; life coaching; blogging; how to write a synopsis or query letter or create a portfolio; animal communicating; a or presentation on creating access or what it’s like to live with your illness or to be partnered with a guide dog. You can specify if this is something that can be done by phone, internet, or in person. If you have an idea, bring it, and I bet we can make it happen!

Things to Keep in Mind

  • The purpose of this auction is to help Marlena and allow her to continue teaching NVC to people who really benefit from it and would otherwise not to be able to access it. However, if you have any sort of business — an online store, a consulting business, teaching, etc. — this is also a way to let more people know about you, your services, or your products. All listings of donated items will link to the donor’s website and include their logo or image and a blurb about what they offer. It’s part of our way of saying, “Thank you.”
  • Unless they are antiques or collectibles, tangible items (products, goods) must be in new or like-new condition.
  • Tangible items will be shipped. Whoever donates the item will also be donating the shipping. So, if you’re choosing between sending something heavy or bulky (like a big, hardcover book) or something lightweight (like a silver necklace), you probably want to choose the small, lightweight thing. You’re free to choosing the easiest, most inexpensive shipping option you like; we are not FedEx!
  • Services have many advantages: 1. There is no shipping cost involved. 2. If it’s something you can offer by phone or internet, this usually means it can be bid on internationally. 3. If it’s something you can offer to a group (a workshop or class), we can take several winning bids on one item.
  • If your service or product can only be offered to those in your local area, please indicate the area (e.g., open to bidders in the SF Bay area only, or open to those in NYC only, etc.).

If you would like to donate an item (product or service) to Marlena’s Teaching Fund, here’s what to do:

Contact me as soon as possible to let me know you’re donating something. Please include as much of the following information as possible:
1. A description, which can include things such as materials, size, weight, number, handmade, etc. (Unless I can lift this from your website or a mass-market site, like Amazon.)

2. Any background on you or your product that makes it more appealing (or, again, if this is on your website, let me know, and I’ll get it from there).

3. Your website, shop, blog, Facebook page that is associated with your donated service or product.

4. An image to accompany the description (unless it’s something I can lift from your website or from Amazon, etc.). If it’s a product, send a picture. If it’s a service, your logo or a picture of yourself or something is great. If you are willing to include a text description of your image, that will save me a lot of energy on adding alt tags, but it’s fine if you don’t.

5. The retail value of the item (unless I can find that online). If it’s a one-of-a-kind that doesn’t have a retail value, just take a guess.

6. Whether there are geographical restrictions on who can bid (in USA only, in Canada only, in North America only, in your city only, anywhere in the world, etc.).

7. If this is a tangible item, if you know whether it’s coming from an environment that is smoke-free, or fragrance-free, or pet-free, please indicate this (it doesn’t have to be all three, e.g., if it’s coming from your smoke-free, pet-free home, say so; if it’s coming from your fragrance-free home, say that. If you don’t know what it’s been exposed to, leave this out).

NOTE: If you know you want to donate something, please contact me as soon as possible so I can start a listing — even if you don’t have all the information yet. You can get the rest to me as you are able.

The auction is scheduled to go up Friday, MARCH 9, so I’ll need all item listings by Sunday, MARCH 4 at the latest.

How to get your information to me:

Thank you so much for your support!

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

P.S. If you use email to contact me and don’t hear back within 24 hours, it probably means your message went into my spam folder. Please try again, preferably using one of the other contact methods.

What’s in a Name? Lymie, yes. Canary, yes. CFIDSer, yes. Patient, no.

The Patients for a Moment (PFAM) blog carnival goes up this Wednesday (gulp — tomorrow!). This was my call for entries. The submissions so far have been fascinating. You can look forward to a great carnival!

Green and white rectangular badge. On top, "Patients" is written in all capital letters, in Times New Roman font in white on a kelly-green background. Below, on a white background, "for a moment" is written in green, slanted up from lower left to upper right, in a more casual, slightly scrawled font.

Are You a "Patient"?

The “P” Word

Meanwhile, here is my post on the topic I picked (and why I picked it).

PFAM — which has been occurring twice a month for over two years — was my introduction to blog carnivals. The first time I saw the term, “blog carnival,” was in a call for submissions for PFAM. I immediately found out what a blog carnival was and determined to get involved in PFAM. I have written posts for PFAM a couple of times, but I didn’t contribute nearly as often as I’d intended, and until now, I never volunteered to host. This is in contrast to the disability blog carnival, the ChronicBabe carnival, and especially the Assistance Dog Blog Carnival, the latter of which I founded.

Some of my difficulty with PFAM definitely stems from its structure — the tight deadlines* and the requirement of answering a specific question don’t gel well with my physical and cognitive limitations. However, given how often PFAM occurs, how much I enjoy blog carnivals, and the fact that PFAM is a chronic illness carnival, I thought to myself, “What is holding me back from getting more involved with this community?” The reason was staring me in the face: I don’t identify myself as a “patient.”

“Patients” isn’t just the first word of PFAM, it’s also central to its purpose (quoting the carnival’s “about” page):

Patients For A Moment is a patient-centered blog carnival – for, by, or about patients. . . . The goal of the carnival is to “build connections within the community of people who blog about illness, disease, and disability. This includes doctors, nurses, caregivers, even policy wonks – but especially patients.”

The actual goals and membership of the carnival are quite sympatico with my interests — “build[ing] connections within the community of people who blog about illness, disease, and disability” — and I am familiar with several of PFAM’s contributors. But I couldn’t see my way clear to hosting the carnival unless my topic was to question the use of the term, “patient,” itself.

Some might find my focus on that single word, “patient,” to be nitpicking. Yes, I’m a writer. Yes, words are important to me, but my feelings about being called a “patient” go beyond semantics. I have a visceral reaction, bordering on revulsion, at hearing myself described this way.

To me, the only accurate or appropriate use of “patient” is situational. It is either relational — the person who is one half of the doctor-patient dyad — or it is locational — the person who is in a medical environment (usually a hospital) — receiving care, undergoing tests, or consulting specialists.

However, just as often as I read or hear “patient” used in one of these appropriate contexts, I also see it used as a generic term for a person with a chronic illness, condition, or disability. How I react to this usage is determined by who is using it, and how. Specifically, it makes a difference to me if it’s a mainstream/”nondisabled” person or form of media using it, versus when someone with the disability in question is using it about themselves.

When the Nondisabled World Calls Me a “Patient”

My reaction to nondisabled/healthy people referring to me as a patient is relatively clear-cut. I don’t like it. Almost every magazine, newspaper, or TV program referring to someone with a chronic illness will refer to them as “patients” — if we’re lucky. Usually, along with references to patients, we are also “struck with,” “afflicted with,” or “the victim of” our disease. That last one really highlights the problem with this kind of language: to be a victim means to have been attacked and helpless, as if the disease has some sort of malicious intent, and we have lost all power and control. Such language supports a perception of people with disabling chronic illnesses as pathetic and different. We are not just regular people, living our lives; instead, we have been singled out for attack, poor things. I am one of a massive movement that has been trying to get writers and journalists to use “person first language” for over two decades, with little success.

“Patient” may not technically carry the same weight as “afflicted,” but its usage, its social weight, puts it in the same category as this more obvious “victim” language. To be a patient is to be medicalized and stripped of our identity as people who exist and act outside of medical settings. When I’m blogging about disability or training my service dog or having a phone conversation using a TTY, all of these activities are influenced by my having a disability, but none of them have anything to do with my being a patient. I am not getting medical care as I sit here and type this. I am living my life.

Even when, last night, I used my PICC line — a medical device that was inserted into my arm in an operating room — to infuse an antibiotic prescribed by a doctor, I was not a “patient.” I was and am a person living with Lyme disease, managing and treating my disease. I can blog, eat, train my dog, follow Twitter, watch a movie, and/or talk on the phone while I infuse. I am acting, not being acted upon.

However, when the visiting nurse comes tomorrow to change my dressing, I will be her patient for the half-hour or hour she is here. She will be doing to me — flushing my line, cleaning my arm, putting on a new dressing, asking me questions about my symptoms and functioning — but once she is gone, it’s just me in my home.

I am not the patient, however, of my personal care assistants (PCAs). I decide what needs doing and how it will be done. They are my assistants, not my nurses; therefore, even when they are assisting me to do what I can’t do for myself, I am not their patient or their client. I am their employer.

When People with Chronic Illness Use “Patient”

My feelings are less straightforward when I read articles, posts, fliers, etc., by people with my conditions who refer to themselves/us as “patients.” There are two main reasons why they use this term. One reason is the same reason that journalists do — it’s convenient. Saying “Lyme patients” is much shorter and less awkward than saying “people with Lyme disease.” It’s often used as a way to distinguish the person with the illness from others who might be concerned with the issue, such as “families,” “caregivers,” and “healthcare providers.”

However, there’s another issue at stake for those with my disabilities, in particular. Myalgic encephalopathy (ME), multiple chemical sensitivity (MCS), and Lyme disease all have histories of being treated as “not real” illnesses. We are told that our symptoms are psychosomatic. We are told the illness is a product of our personality or lifestyle. We are told there is no such thing as ME, MCS, or chronic Lyme, and the labels for these diseases carry these messages.

Our diseases are given mocking, belittling names: “Yuppie flu” or “chronic fatigue syndrome” for ME/CFIDS, as if the only symptom of ME/CFIDS is “fatigue.” The chemical industry’s name for MCS is “idiopathic environmental intolerance,” putting the emphasis on the first word — idiopathic — which means “of unknown origin” and removing “chemical” from the name altogether! The Infectious Disease Society of America, which has been prosecuted for conflict of interest in its relationship with the insurance industry, denies that chronic Lyme disease — persistent infection by the bacteria and parasites that cause tick-borne disease — even exists. Instead, anyone who is still sick after a month of Lyme “treatment” is said to have “post-Lyme syndrome,” a psychological response to illness.

In other words, words matter. I didn’t need a study to prove it, but there is one. Several years ago, a study about the impact of the name of CFIDS/ME was conducted. A mixed group of fourth-year medical students and medical residents were each given a case study of someone with ME/CFIDS, including symptoms, history, etc. They were randomly divided into three groups. All got the same case study, but the name of the disease was different for each group. One-third of the participants’ patient was diagnosed with “myalgic encephalopathy/ME,” one-third with “Florence Nightingale disease/FN,” and one-third with “chronic fatigue syndrome/CFS.” Those who received “FN” or “ME” cases believed the severity of the patient’s illness was greater than those who had the “CFS” case study. Further, 67 percent of those with the “CFS” study recommended psychiatric treatment for the patient, versus 53 and 48 percent for FN or ME, respectively.

I didn’t need a study to tell me that the name of my disabling condition is insulting and misleading, because I’ve lived with that perception since 1995. I have likewise lived with doctors and lay people discounting my MCS as psychosomatic, as a form of “hysteria” or paranoia. Again, this didn’t happen in a vacuum. The chemical industry has been actively working to discredit the experiences of people with MCS — often in partnership with federal agencies and the military — for a very long time. They have money on their side.

Then, I got Lyme disease, which I had previously thought was not a “controversial” illness. Once again, money has changed the perception of how this disease is perceived and treated — and therefore how I was perceived and treated (or left untreated). As in the other cases, the name of the disease, “chronic Lyme,” has been dismissed.

Given how much people with my conditions have been derided, denied, and denigrated, it is not surprising that most of the individuals and organizations who advocate for us — who try to raise awareness about the validity and seriousness of our diseases — focus on the potential severity of symptoms and systemic injury, and the medical proof of our illnesses — the brain scans, blood tests, or other objective measures of living with an organic disease. Almost without exception, those who do this work refer to us as “patients” — Lyme patients, ME patients, CFIDS patients.

One exception is advocacy groups and organizations for people with MCS. Some do use the term, “patient,” particularly those in the medical and scientific fields who are concerned with chemical injury and MCS. However, because most with MCS view our condition as having been caused by being poisoned or chemically injured, and our symptoms as the more severe manifestations of poisoning that everyone would have if the dose was sufficient, not all with MCS even consider ourselves “sick.” For many, it is the rest of the world that is poisonous, and we are just the canaries in the coal mine. Others do identify as ill, as patients.

So, when I see “ME patient” or “Lyme patient” on an educational or activist website or blog, I do cringe, but I don’t blame the person who penned the phrase. I think it feeds a need for many of my community to have our real sufferings — particularly our mistreatment at the hands of the medical profession — acknowledged.

Lymie, Canary, PWC

I much prefer, however, the lingo we have developed among ourselves. As with any subculture, we have created our own “in-speak,” which says more — and yet uses fewer words — than the awkward language of the professionals and the pitying, patronizing, or disputing public.

When I first got sick, the terms most used in the MCS and CFIDS/ME community were “EIs” for those with environmental illness, and PWC, which — adopted from the AIDS community’s use of PWA — meant “person with CFIDS.” Over time, those with MCS have mostly switched to calling ourselves canaries or MCSers. “PWC” has fallen out of use, but I don’t know of any neat replacement; sometimes it’s CFIDSer or CFSer or simply “ME.” (As in, “I’m an ME.”) In the Lyme community, there is consensus — we have the delightfully short, descriptive, and playful, “Lymie.” (One Lymie, two Lymies.)

None of this even gets into how I navigate the broader disability community — particularly the disability rights movement arm — using words like “sick,” “ill,” and “disabled,” interchangeably to describe myself. That does not always go over well, let me tell you!

But you all have been patient to read this long, dense post, so before you get sick of the topic, I will end, because five other people with chronic illness (who may or may not identify as patients) will be chiming in on this discussion tomorrow!

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

*Starting in 2012, PFAM will move to a monthly schedule, which will make it slightly more doable for me. However, hosts will still be required to give only 10 to 14 days’ notice for bloggers to write and submit a post on that month’s topic. Lead time is my real stumbling block.

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