Posts Tagged 'fragrance sensitivity'

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

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

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


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