Posts Tagged 'multiple chemical sensitivity'

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)

Signal Boost: Lyme Survey & New MCS/EI Community

Lymies! Please speak up about treatment options!

LymeDisease.org (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

Waspish Wednesday: Ask Alima to Ditch the Fragrance

A couple of months ago, I wrote a blog in which I wore makeup and enthused about the company, Alima Pure, that made the makeup. I bought this makeup many years ago, and it’s still in great shape. I even linked to them. The big deal was that they made the only makeup I’d been able to tolerate since I developed multiple chemical sensitivity (MCS) in 1995. I had tried other brands that were sold by MCS catalogs, even, and not been able to tolerate them.

All of this company’s products are basically loose mineral powder (blush, foundation, concealer, eyeliner, eyeshadow) that must be applied with a brush of the correct size. So, it’s a fair amount of work. However, since it’s just minerals, there’s no gunky stuff that makes me sick. And no smell.

The problem is that I’m not all that interested in most of those products. Back when I used makeup, I wore eyeliner, mascara, lipstick, and some powder to take the ever-present shine off my face. (Since I developed MCS and rosacea, I am even more naturally “rosy” — aka face-like-a-beet — than I was before.) Thus, I have never used blush in my life, and I doubt I ever will. I rarely bothered with eye shadow, either; it just wasn’t my “thing.”

What I really wanted was lipstick. Alima doesn’t sell lipstick, but they sold a wide variety of lip glosses that were tinted. I bought several samples of the darkest shades they had, and there were some I liked quite a bit. It was pretty miraculous that I was able to use the lip gloss, because I had not been able to use anything on my lips, even plain beeswax lip balm, since I got sick.

I decided that eventually I would buy a full-size tube of gloss, because the little pots that the samples came in had to be sort of scooped out with my finger, which was messy and wasteful. However, since I only use makeup about twice a year — and if I do, I have to make sure not to wear a mask, or it will smudge all over the place — this was not a huge priority.

Finally, a few weeks ago, I got a note that the company was having its seventh anniversary. I’m not sure how I got on their mailing list after having not been on it for many years. Anynoodle, they were giving away free eye shadow and offering a discount on any purchase. I thought, “What the heck?” And went to look at the lip gloss.

I was disappointed to see that only a few shades were offered now (used to be a couple dozen, currently there are nine), none with the same names as the ones I’d bought before. There was also very little information about what they looked like. I scoured the information on the pages for the glosses that looked promising, but the detailed descriptions of shades were not part of their new look, either. I took my best guess — buying the two darkest reds — and placed my order.

Normally I put a lot more care into buying things — reading all the details and double-checking everything. But I was sick and exhausted, and I found their website confusing and difficult to navigate. I thought about calling them before I placed my order, but it was the weekend, and if I waited for their customer service hours, I would miss the sale.

Some of my confusion was because there was one page that said, “Lips,” which was the introduction to the lip gloss, but which did not contain any detail on any of the glosses. You had to go to separate pages for that. Also, the writing was minuscule. I am used to enlarging the print on my screen, but I was tired, my eyes were tired, and I guess I didn’t enlarge it enough. I was assuming more detailed information about the lip glosses would be on the pages that included the actual information about each lip gloss.

I read the “description” of each gloss (which consisted, usually, of one or two words, such as “sheer red,” and that’s it) and the ingredients. The ingredients were another long list in tiny, tiny font. I skimmed them, and it seemed to be pretty much minerals, like what I’d bought before. I did not read every single of the couple dozen ingredients, as it was all sort of blurring together, and I had already purchased products from them, so what could have changed so much, right?

Obviously, from the title of this post, you know I was wrong.

A week later, my box of luxurious new products arrived. It was all very long and non-smelly and clean. There were the free eye shadows, a couple of free samples of eye shadows I hadn’t ordered, and the two tubes of lip gloss, each in their own long, thin cardboard box. I opened one, pulled on the wrong end for a while, then pulled on the right end to remove the cap, and prepared to . . . ack! What was that smell? Why did my lip gloss reek of mint? Was I imagining this? What was going on?

I hurriedly replaced the cap and looked at the ingredients list on the box. Buried in the middle of a an 88-word ingredients list was “Organic Mentha Piperita (Peppermint) Essential Oil.”

They had added a freaking fragrance essential oil to their lip gloss! AUGH! I checked the box on the other one, and it had the same mint oil as its last ingredient. AUGH!!

I had been looking forward to this for so long — my full-size tube of lip color! I’d been so excited, and now I had spent twenty bucks (including shipping) on worthless stinky crap!

I called them up and spoke to a customer service representative. She was not apologetic. She was defensive, and she did not listen to me. She kept saying things like, “All our other products are unscented. The lip gloss is the only thing that is!” And, “We made it gluten-free!” And, “We announced this in our newsletter!” She didn’t seem to get why none of this was relevant or helpful.

One of my main points was that they should have made it very clear on their website that there was added fragrance to the products. That it should say in big, bold letters, on all the lip gloss pages, “These lip glosses contain fragrance from essential oils.”

She kept telling me how they’d sent out announcements to their email list that this change was coming. I told her repeatedly that didn’t do me any good because I had not been on their email list, but either she didn’t believe me or she just wasn’t listening. I don’t know. She just kept repeating that.

Then we got into an argument over whether there was, in fact, any information on their site warning customers that the lip glosses were scented. It turned out that buried in a small paragraph, in tiny print, on the “lips” page — not the page that actually gives you any information about any of the individual lip glosses, mind you, but what seems to be an introductory page that just says, “Hey, we have stuff to smear on your lips!” In their minuscule, five-sentence blurb on the “lips” page — which was basically the only thing on the page — they included these two sentences: “Lightly scented with a touch of organic peppermint oil. Yes, you deserve it.”

Oh, I deserve to have my face burn and turn red? I deserve to be gifted with a headache and a sore throat and brain fog? Swell.

Obviously if I had seen that, I would not have bought anything! But I didn’t see it, because it appeared to be a page that was basically devoid of information or actual products!

She also kept repeating that if I had read the ingredients lists, I would have seen the mint oil. Oh, well, obviously I deserve what I get because the fact that there was fragrance didn’t LEAP out at me from the ingredients list, which looks like this (except much, much tinier):

Organic Prunus Amygdalus Dulcis (Sweet Almond) Oil, Organic Ricinus Communis (Castor) Seed Oil, Organic Butyrospermum Parkii (Shea Butter) Fruit, Organic Beeswax, Organic Carthamus Tinctorius (Safflower) Seed Oil, Organic Cocos Nucifera (Coconut) Oil, Organic Camellia Sinensis (White Tea) Extract, Organic Theobroma Cacao (Cocoa Seed) Butter, Organic Punica Granatum Linn (Pomegranate) Seed Oil, Organic Simmondsia Chinensis (Jojoba) Seed Oil, Organic Mentha Piperita (Peppermint) Essential Oil, Organic Punica Granatum Linn (Pomegranate Extract, Tocopherol. May Contain [+/-]: Mica (CI 77019), Titanium Dioxide (CI 77891), Iron Oxides (CI 77491, CI 77492, CI 77499).

That fragrance mention — the single word, “essential” — really arrests the eye, doesn’t it?

Of course, they don’t allow returns because these are personal care items. The service person offered me store credit to buy any of their other items, but since it will take me the rest of my life to use them, that’s not very helpful.

Pretty much, I kept trying to get my points across, and she kept arguing with me, not apologizing, not agreeing that I had anything to be upset about, and not offering me any compensation. My points were, in order of importance to me:

1. You should put in BIG BOLD LETTERS EVERYWHERE that the lip gloss that is sold on your site is FRAGRANCED.

2. I want my money back on these lip glosses, since I will never be able to use them.

3. Why the fuck did you add fragrance to something that was perfectly good beforehand? Every other makeup company in the world puts fragrances and toxic crap into their products. Why on earth would you screw up the thing that made you a viable alternative?

I was much more polite than this in person, which got me nowhere. Finally, I was so upset, I started crying and said that I lived on a fixed income, that this was a really big deal for me, that I had been looking forward to it, and that I did not feel I was being heard.

That seemed to make a dent. She stopped defending and parrying and listened to what I was actually saying. That turned things around.

She said she would tell the owner — who made these decisions, not her — my very strong request to have very blatant warnings about fragrances in their products, and my plea to get rid of the fragrances as soon as possible. She also said she would refund the cost of the lip balms.

She did tell me again, however, that they had made the lip balms gluten-free for some of their customers, and then someone else had complained that they have soy in them! (As if, you know, I should join in on her righteous indignation that someone dared indicate to them that they have a soy allergy.) She sort of insinuated that removing the gluten had been a reason for adding the fragrance, which makes no sense, since so many of us who are allergic to gluten are also sensitive to fragrance! And also, I’ve never heard that gluten or essential oils are required for making lip gloss; clearly they aren’t, because they used to make unscented lip gloss, and now they make gluten-free lip gloss.

She also said that I was just one person, and that therefore my complaining about the fragrance wouldn’t make any difference. They would have to hear from a lot of people that they had an issue with the fragrance before they’d consider changing anything.

On one hand, her saying, “You’re just one person,” didn’t feel so good. It kind of underlined the sense I’d had throughout our encounter, which was, “Your needs aren’t important.” On the other hand, she was being honest with me, and I appreciated that. I know that usually a large number of people need to complain about a product before a company will change it. The logical course, it seemed to me, was to write a blog about it and ask YOU to contact this company and get them to switch back to fragrance-free products!

However, I did not write this blog soon after it happened. For the last six weeks, I’ve been too sick to deal with this. Now, I’m finally writing about it, and I just checked their website and — surprise! — they now have eliminated the useless, irritating introductory “Lips” page and combined it with the actual list of lip balm products. So now, at least, that one tiny sentence that indicates there’s fragrance is at least on the same page as the lip glosses themselves. However, it’s still just that one obnoxious little sentence in tiny font at the end of their twee little paragraph about the lusciousness of their products. They have NOT indicated on the pages for the individual glosses, “NOTE: This product contains fragrance.” It is not in large or bold font. It’s still very easy to miss.

So, my friends, I would greatly appreciate it if you would contact Alima Pure, using whatever method works best for you:

Telephone: 503-786-8224 or 1-888-380-5420

Snail-mail:
Alima Cosmetics, Inc.
18342 SE River Rd.
Portland, OR 97267

E-mail: Use the form on this page, http://www.alimapure.com/alima-pure/contact-us. (I don’t think there is any word verification/CAPTCHA, thankfully.)

Here are some talking points for your phone call or email or letter:

1. Alima Pure should reformulate their lip gloss to make it fragrance-free. Fragrance is unnecessary and only makes the product unavailable to those with chemical sensitivity.

2. Until Alima Pure changes their lip gloss formula, all pages relating to lip gloss should contain a notice in highly visible — large, dark print — indicating that the lip glosses are scented.

3. One-third of the population has a sensitivity to chemicals, with fragrance being among the most common source of symptoms. They are losing customers by following the herd and making all their lip products unusable for people with fragrance sensitivity.

4. Creating a gluten-free product is not incompatible with going back to fragrance-free. It is possible to do both, and in fact, there is a large overlap between those with gluten intolerance and those with chemical sensitivity.

5. If they do remove the fragrance from all their products, you will be happy to tell your friends with fragrance and/or gluten sensitivity about them.

Thank them for their time.

Please spread the word on this! Share on Facebook, Twitter, Tumblr, etc. Please ask friends to send an email, etc.

If you have a blog and you’d like to cross-post this piece, I’d appreciate it very much! I only ask that you cite me as the author and include a link back to After Gadget with your post.

Thank you!

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

Addendum: NYT Photo Essay on Living with MCS

I just posted about resources for learning more about multiple chemical sensitivity (MCS), and now I find out that yesterday the New York Times ran an amazing, powerful, moving, important photo essay about people living with MCS by photographer Thilde Jensen.

Please check it out and spread the word. Link is above. The essay is called, “Everything Makes Them Sick.” The photo of the woman slumped in her bathtub — that is the one I saw and thought, “That’s me.”

Thank you!

- Sharon, the muse of Gadget (who also had chemical sensitivities), and Barnum, SDiT

QuickPress: Funny Dog & Resources for Learning about MCS

A quick training anecdote from yesterday:

I was working on “plate zen” with Barnum, which means I’m trying to teach him that all plates, bowls, and mugs are out-of-bounds for dogs. I am trying to teach this as a default behavior, which means I don’t want to have to say, “Leave it,” 80 times per meal. I want him to just know to leave all plates alone.

I used different plates, sometimes with a piece of food on them, sometimes empty. Sometimes I’d put them up to his nose, and sometimes I’d hold them in my lap. Barnum needs to have all the fine points explained to him. He apparently realizes that he’s a dog, and that therefore he doesn’t generalize well. (Gadget hadn’t read the book on dogs not generalizing well, so I used to think it was a load of hooey.)

Anyway, I switched back from a blue plate (yes, it was the blue plate special — thanks for asking) and put a clear glass plate in my lap. I waited to see if Barnum would back up.

Barnum waited to see if I would give him some clue as to what to do. I didn’t, so Barnum offered, “Chin,” and rested his chin on the plate in my lap. Then, like the gifted and serious-minded dog trainer I am, I fell out laughing.

It was so adorable: “Here, would you like me to put my big slobbery beard on this plate? Look, I’m really resting my whole head on the plate. Will you click me now?”

Barnum backed up in confusion when I started to guffaw. Having learned my lesson, we tried again. Barnum rested his head on the plate again. I burst into laughter again. Poor dog. We did eventually actually get to some real training, and he earned some clicks and treats.

I am very behind on emails and comments. I’ve been super sick for the past two weeks. I sent out a mass email telling people to please be patient, but there is a problem with my email, and I’m not getting all of them! So, I know at least one person didn’t get that.

Anyway, I am not apologizing, but I am explaining.

Readers have requested I write on certain topics. In many cases, I have written partial blogs in reply, but I haven’t finished them. In other cases, I feel so overwhelmed, I don’t know how to begin.

For instance, many of you have asked what you would need to be able to do to visit me. I am deeply appreciative of the interest you’ve shown in learning about MCS and less-toxic products! I wish I were more able to answer your questions in a timely manner.

Until I can write more, here are some links of resources put together by friends of mine:

  • Another great resource is the video/DVD, Secondhand Scent: Accommodating People with MCS. I’m biased because I participated in the making of this video, but I honestly think it is one of the best tools available to explain to people how and why to become more MCS-accessible. To order the video, please call the Boston Self-Help Center’s message line, 617-277-0080 (voice/TTY), and someone will call you back with details and arrangements.
  • Finally, another video/DVD about living with CFIDS and MCS is Funny, You Don’t Look Sick. This doesn’t provide information about how to become MCS-safer, per se, but before I got Lyme disease and got sicker, it was a pretty good description of my life (except in terms of severity). Co-produced by singer/songwriter Susan Abod, the movie is “an autobiography of an illness.” It gives you an eloquent glimpse into the life of someone with MCS and CFIDS. If you scroll down, you can watch a trailer for the movie on this page.

Indeed, Susan is finishing a very important second documentary, which she has been working on for over ten years, right now! (The trailer for this movie, Homesick, is below the one for Funny.) I’m very excited about this. I hope to interview her about that project soon.

Enjoy! I am very grateful for the requests for information, even if I’m not always able to keep up with them. Keep it coming!

- Sharon, the muse of Gadget, and Barnum, head-on-a-platter SDiT

Signal Boost: Guide Dog Partner with MCS

It’s the last day of May, which makes this the final day of MCS awareness month. Appropriately, my friend, Karyn, who usually blogs about her assistance dog, Thane, has written a terrific post about life with multiple disabilities, including MCS.

She writes about how every day begins with uncertainty as to which disability will do what, and how that has affected her decisions in training her guide/hearing/service dog. This is a topic I really relate to.

She also explains why she tries to keep a certain level of privacy about her disabilities, yet was compelled to speak out now.

The blog is Through a Guide’s Eyes, and the post is Different Ways for Different Times.

I don’t talk much about my disabilities in my blog because frankly I just want a place where I am seen for the inside pages as opposed to the book cover of the physical shell. That all said, I am beginning to feel the need to let down my guard as others have done. Perhaps its because by letting down my guard, I can share with you the kinds of training that can truly prepare one for the unknown- so here goes.

Please read it and share it. While her experience is unique, there are aspects of it that will resonate with people with many disabilities, and hopefully raise a little awareness for everyone about the disabilities they don’t share with Karyn.

Thank you, Karyn, for this excellent post.

-Sharon, the muse of Gadget (who also had chemical sensitivities), and Barnum, SDiT

P.S. Don’t think that just because May’s over I’m going to stop blogging about Lyme and MCS awareness. As far as I’m concerned, having Lyme, CFIDS, and MCS means hardly ever meeting deadlines. So, June is just an extension of May in my world. (Also because I have no sense of time.)

P.P.S. I forgot to mention in my last post that it was Courtenay who gave me the idea for the week in review. Thank you, Courtenay!


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