I’m OK, You’re OK… Or Not

When it comes to the people around me, who really try to accommodate my chemical sensitivity condition, I realize I sabotage their good intentions sometimes by trying to accommodate their accommodating gestures.

Wait, don’t get confused yet, there’s more. Maybe you you should lie down on the couch.

Am I running through Dr. Thomas Harris’ levels of Transactional Analysis? I’m guilty of that with different people in my life. Who doesn’t become the “Parent” or “Child” when interacting with siblings. Right? It’s not just me, is it?

The “I’m OK, You’re OK” I’m talking about is my own personality trait of being… well, I’ll just say it, A People Pleaser. Why am I like this? We won’t go there, but I have my suspicions. Still, after nine years of dealing with and still learning about my own chemical sensitivity, I still struggle with being completely forthright in declaring my needs to others.

When I am around a friend or relative, I can see (they tell me) that they have made every precaution in anticipation of our gathering. They did not spritz the perfume, they did not slap the face with aftershave, or, and this doesn’t usually occur to people, they did not re-wear the shirt they wore the other day when they did wear cologne. I am so grateful to them and I don’t like the attention. I also do not want to make them feel bad if there is still some chemical element that any “normal” (which I’m not) person would consider.

So I try to “be okay” since they went to so much effort. Does this work? You know the answer is NO! And if you know about MCS, then you know that as I sit there conversing, my head is beginning to pulse, I start getting brain fog and eventually get agitated. Then I run the risk of saying something in a tone that I never intended.

So, I’m not OK! Let me just say that. And unfortunately, the people around me are not so OK either. I have never liked to complain because of the subsequent sympathy. I feel as though that is all I get and yeah, I just said that as if it is a bad thing. Therefore, I must make a paradigm shift in my view of how others view me. And I must develop the ability to tell people what I need.

Why is that so hard? Well, when someone comes into my house with a cloud of car-freshener stench around them, how can I possibly ask them to get a new car?

I’m going to work on it though.
Laura

My Hate-Hate Relationship with Home Depot

So I’m sitting in the parking lot of Home Depot. You’ve been there. Tell the truth, you’ve done exactly the same thing.

No, I’m not one of the day-laborers you see in the lot in the mornings, hoping for work. Can you image a day-laborer who’s physically intolerant to chemicals and construction materials? I’d be standing there forever!

No, I’m in the parking lot because Home Depot tries to kill me when I go inside.

If we have important purchase decisions to make, for which my input is needed (“Yeah, that’s good!” is usually my hurried response so I can run out) like choosing floor tiles, lighting or fan fixtures, I’ll go in and suffer the consequences. But those times are few and far between, thankfully.

Otherwise, if I even go, you’ll find me in the parking lot waiting. That’s where I was a few days ago, when it started getting hot in the car. So I got out of the car and stood under the tree watching the crows pick up sticks to make tools out of them, for what I don’t know. Everyone at Home Depot seems to be industrious.

A guy in a van drives by me slowly, looking (leering?) at me. I don’t know if he thinks I am looking for work, and if he does… what kind of work? Whatever!

Then a man comes out of the store to his truck two spaces over from me and pulls his purchase out of a bag. I hear an aerosol can spray noise and before I can see what he’s doing, the breeze carries Lysol spray odor over to me. Immediately, sinus pressure starts as I fumble with the door handle to hurl myself back into my car.

Inside the car, blinking my eyes from the irritation, I can’t help but wonder why this guy is spraying his hands with Lysol? Did he dig around in his cat’s dirty litter box for something he dropped?

litterBox

Edisto Beach Rentals

Sunny Beach

Whether you are chemically sensitive, to whatever degree, or you just love the fresh ocean air, you know how cathartic the ocean breeze can be. And how invigorating it is to be outside, away from the deluge of artificial substances.

On a recent vacation to Edisto Beach, South Carolina I discovered that those wonderfully refreshing qualities on the actual beach carried into the rental house inland where I stayed and that made my trip there very comfortable. If you’re looking for a vacation spot, try a beach house someplace (This is sounding like Stefon skit from SNL: “New York’s hottest club is TRASH…”). They are open, sunny and most importantly aired out naturally from the salty wind. Beach houses usually have blinds instead of curtains, tile and wood floors in the common areas and may have carpet in the bedrooms. And you bring your own linen and towels.

club-cottage-851-smallIf you have a big family these houses are made to accommodate, but if you don’t, perhaps you can vaca with another couple or some friends. That way, you can split the cost too. Prices vary according to the proximity to the beach and size of the house.

A house that is a few blocks in from the beach can average about $416 a week for a 2 bedroom, 2 full bath, that sleeps five. The amenities listed:
Central Heat & Air Washer/Dryer, Dishwasher, Microwave, Cable TV, VCR, DVD.
Pets are allowed, usually with a deposit ($150 Pet Fee & refundable $200 pet security deposit).

Edisto_Beach-3If you want to go all the way and not have to walk or bike the two or three blocks to the beach, the beach front housing can run from a 3 bedroom that sleeps 8 for $900 a week to a 7 bedroom that sleeps 17! with a sun deck and private boardwalk to the beach and outdoor shower that is $3,255 a week.

Edisto Beach is a very secluded, quiet beach retreat that is laid back and peaceful. The sunrises over the ocean are spectacular and the sunsets over the marsh are equally breathtaking. In between there are a few island restaurants and a grocery store to stock up the full kitchen. There is golfing in the area, some historic sites and of course shell collecting and sand castle building!

Here is just one of the sites for information: http://www.edistobeach.com/. And as always you should request green cleaning prior to your arrival, when you make your reservation – you never know, they might actually do it!

Photos by Laura Hardesty

Photos by Laura Hardesty

Happy Summer!
Laura Hardesty

Summer Solstice Sun

Happy Summer Solstice Everyone!

If your locale is going through a heat wave anything like the south east United States, you know it’s pretty darn hot!

Here in Miami we’ve been fortunate enough to have the ocean breeze to keep the heat at bay… or the bay breeze to keep the heat at bay. That is until last week when we also reached record breaking temperatures of around 98 degrees. Factor in our famously disgusting humidity and it is over 100!

There is little shade here in South Florida, what with our trees being the tall skinny palm variety. So an outing prudently requires sunscreen. But with chemical sensitivity, this can be difficult. My doctor recommended a couple of brands to try, one of which is really quite expensive, so I’ve been using the less pricey one – Vanicream.

Now, using the Vanicream on my arms and legs works fine, I’m very happy to finally have a sunscreen I can actually use without getting dizzy, spacey and headachy as I do with traditional sunscreens. But I still cannot apply it to my face. It has no odor that I can detect, there are no formaldehydes, masking fragrances, etc. But I still get itchy eyes and sinus pressure. So how do I protect my face from the sun?

Luckily for me, on this longest day of the year, I came across a photo of a woman at the summer solstice celebration at Stonehenge in England, who obviously has the same problem. She came up with a very creative way of covering her face from the sun since she clearly cannot use sunscreen. Check out the woman in the short yellow skirt… the one with the horse head on her head.

summersolstonehenge

 

Fragrance-Free Hotels

“You have to breath,” said Marc Levy, vice president of sales of the company, Air Esscentials, who provides scent creations (not natural), fragrance machines and air-conditioning scenting systems.

To that Captain Obvious I answer, “Narf!” And you’re not helping us breath. This quote came at the end of one of the most annoying articles I’ve read lately, “For hotels in S. Fla., the scents make sense.” I know, you can feel the ants crawling under skin already, right? Hotels in Miami, Miami Beach and elsewhere have been branding their chains not just with exotic decorations, stunning views, but now with laboratory concocted scents that are spewed into the air on a timer, or burned into your nostrils from strategically placed incense.

All in the hopes that after you’ve gone home and the next time you get a whiff of say, Pure Sunshine or  Hawaiian Tropical (do they mean the punch drink?) that you’ll get an uncontrollable urge (as if you had been hypnotized to flap your wings like a chicken when you hear the term plum blossom) to jump on a plane and hand over $499.00 per night to stay with them again – in this economy. Hey, don’t smirk at that! The ultra luxury Mandarin Oriental Hotel has really taken a hit since people realized their investor’s name started with Bernie and ended with Madoff.

I have noticed an abundance of chemically-odoriferous people here in Miami, and all the stores are heavily perfumed. The heavy hand with the bottle may be attributed to the heat and humidity here, because those who do not partake, smell quite ripe. So, I kind of get that hotels don’t want tourist to be run off from the foul odors of the natives, but their answer does NOT make sense!

BOceanHotelThe B Ocean Ft. Lauderdale hotel says, “We live in an environment where we have an ocean breeze; how do we capture that ocean breeze (scent)” Well, maybe if we all put our heads together, Shaggy, we can figure out this Scooby – Doo mystery for you.  “Ocean” is in the name of the hotel and you’re in Ft. Lauderdale, so you must be near some ocean, right? Oh, you’re just across A1A and you can see the ocean from your front porch? Ah, I know, open the front door and get some free ocean breeze!

Another hotel really take the cake, or should I say cow dung. Their signature scent is called “Wild Cow,” but it’s not what it sounds like. It is lemongrass, ginger and rosemary. That actually sounds very nice, if it is natural and not manufactured to smell like lemongrass, ginger and rosemary. Hey, during Christmas I boil apples, cinnamon and cloves and the house smells wonderful, naturally!

I remember taking road trip vacations and stopping at a Holiday Inn or the equivalent. But since getting chemical sensitivity I have not made a road trip like I used to. Finding a green hotel is not always the same as chemical-free since ozone-blasting a room for allergens and cleaning with the highly scented Tea Tree Oil does bupkis for us, right?

So I did a search for chemical-free lodging and came up with Green Vacation Hub that has a general listing from which you would have to research further to determine if an establishment is actually chemical-free or allergy-free.

The best way to find safe lodging is by personal recommendation, so I wonder if any of you have had a positive experience and can share it with everyone here, as well as on the forum: MCS Awareness Forum. And share this with your MCS friends so we can compile a world-wide reference for people who just want to take a day off from being in the house!

Cheers,
Laura

Born This Way – Not

Was I born this way? You bet! But not when it comes to MCS.

I’m rather nostalgic today, as I’ve been looking at pre-mcs photos. I’ve shut myself off so much, physically and emotionally – so that I don’t think about how profoundly my life has changed. The old (over nine years old!) photos show a person who always hung out with her friends at their house, at clubs, at my house, after work. I went to this great Thai restaurant with coworkers for lunch and always had a great time.

I wore perfume, I danced with friends in the smoke and fog filled dance floors. I barbecued! I threw parties and went to parties. And most importantly, I really hugged my friends and family, where now it is a cursory, brief hug, if at all.

So for me, it all started to change when I noticed a dizziness and congestion. So I stopped wearing any scented products but other people’s perfume, scented laundry detergent in their clothes, etc. still bothered me if they came in my office or near me. Along with that came sinus infections, complete lethargy and exhaustion. Then came the environmental inspection of the building I worked in. Then I went home and I’ve been here ever since. No more sinus infections and I only get the exhaustion when I’m exposed to those dastardly triggers when I go out.

I am very curious as to how other people have developed their chemical sensitivities. Or were you born that way?

Okay, boo-hoo Cindy Lou, so I can’t wear perfume. No big deal. But I do miss socializing. But now I can do that online. So, I encourage everyone to play Lady Gaga’s video below – enjoy the fog machine and crowds without worry, and dance with me!

Shower Shop Repeat

I’m going out to the store today… reluctantly. I try to get all my errands done in one day because I usually feel pretty bad and exhausted by the time I get home. The process is started with a shower. Read more

Memorial Day Heroes

MCS Awareness honors our brave military personnel who have made the ultimate sacrifice for our country with their lives.

Though I said they “…made the sacrifice” that has always sounded inappropriate. It sounds like their deaths occurred because they decided to step forward from the lines of battle, or step out from a building in urban combat, in order to end the conflict.

You sacrifice eating sweets so you can lose weight. You sacrifice buying that new 3D TV, so you can pay the bills. You willingly sacrifice.

What these soldiers did, and continue to do, is fight in offensive tactics to defeat the enemy and fight defensively to survive the attack. In this simplified overview, they are trying to survive while defeating. They try to survive because it is human instinct, and so they can continue to fight, and so they may come home to see their loved ones. They try to survive because it is their duty.

But in the chaotic horror of war, or conflict as we have now, fatal strikes are made and these people’s lives ARE SACRIFICED. Yes, they knew when they enlisted that this was the possible outcome. When they signed up they sacrificed right then, and then every day after that.

And we as a country sacrifice these volunteers and draftees. And today we owe the deceased a great deal of commemoratory gratitude.

So thanks to those soldiers who have died in war and conflict, as well as the police, firefighters and emergency responders and heroes who died during, and in the aftermath of nine-eleven.

Laura

Perfume Hangover

I woke up at around 3 A.M. with sinus pressure and knew it was not going to get better. I propped my head up with a second pillow and regretted the perfume party the day before. You’d think I would get up and take something for it and go back to sleep, but the last time I did that I spent the next 4-6 hours sick and retching from taking the pill on an empty stomach. And you can imagine how fabulous a headache feels when you’re throwing up.

I finally forced myself to move my head and get up. I shuffled into the kitchen and groped like a zombie after fresh brains for the coffee, something to eat and pharmaceutical relief.

So what was the culprit of today’s chemical sensitivity reaction? Did I go out to a perfume store as kind of a controlled-exposure treatment program? No! A friend whom I have not seen in a long time, called to say she was in the neighborhood and wanted to stop by. Sure! Why not?

For anyone who does not get headaches, ringing in the ears and dizziness from the scent of being in the same room as someone wearing perfume, a friend stopping by wouldn’t be given a second thought. But for over 11 million people who have moderate to severe MCS this can end up feeling like a zombie did try to eat your brains.zombie-perfume

During the visit, I sat as far away as I could without leaving the room and after her departure I opened the windows to air out the room. I did what I could with nasal spray and staying out of the “affected room” until the pressure in my head subsided, but invariably when this exposure happens, sinus pressure and a headache starts up again after I go to bed.

There’s a reason friends don’t stop by very often and why I don’t go to their houses. It is IMPOSSIBLE for them to accommodate me. And how could they? Am I going to tell my impromptu visitor, “No, go home first. Shower, wash your hair, don’t put on any lotion, deodorant or hair product. And oh, don’t wear any clothes that have residual scents from being worn before.” Yeah, that’ll really keep the visitors coming!

According to ilru.org “Women are more susceptible to auto-antibody and autoimmune illness and chemicals induce auto-antibodies. Women have less of an enzyme that detoxifies both alcohol and chemicals called alcohol dehydrogenase (Freeza et al, l990).”

Apparently, hangover is the right analogy for this phenomenon of recovering from a chemical exposure temporarily, then waking up with a raging headache and weakness.

I had to cancel an appointment this morning and recovery is slow, but it was nice to see my friend because that doesn’t happen very often anymore.

Laura

MCS is Like Being a Lighthouse Keeper in a Hitchcock Film

LighthouseI had always wanted to be a lighthouse keeper. It was a very romantic and mysterious notion, and I don’t mind being alone. I would be able to hear the mesmerizing sounds of the ocean, feel the sea breeze and, hey, there’s very little traffic on my way to work! I thought it would be wonderful. Then I visited a lighthouse and some reality started to set in.

I began climbing the circular stairs leading to the lantern room of the lighthouse and a weird sensation came over me, like my head was shimmering. I gripped the cold iron railing with sweaty palms and my legs became heavy. Why, I felt like Scottie Ferguson from the Hitchcock film Vertigo! By the time I finally made it to the gallery deck, looking out over the water, I felt more like the other character, Judy Barton, sure that I would be thrown from the tower. Okay, so I crossed lighthouse keeper off my list once I got down to that wonderfully horizontal ground below. So much for the lonely life of a beacon, but the experience was a bellwether of sorts.

Now that I am fully entrenched in a disorder I’d never heard of until I got it, I am sorry that I ever wished for a solitary life. Since I developed chemical sensitivity nine years ago, my life has become progressively isolated and very difficult. If you have, or know someone who has multiple chemical sensitivity (MCS), you know that every place you encounter, every person and every thing is a trial and error – learn as you go kind of life. Exposure to seemingly innocuous substances for me is often comparable to a regular person walking into a closed room that is being fumigated.

If you are just learning about living with chemical sensitivity, I hope you can pick up some tips from my experiences that I’ll be sharing on this blog. You might avoid a headache or two and be able to share your insights here.

If you do not know anyone who must avoid all perfumes, chemicals, departments stores, scented hair products, and even avoid hugging you just because of your lotion or aftershave, then please stay with us to learn. Enlightening others about this condition is a part of the “awareness” in the title of this blog. And I think we would all appreciate your reading this blog most of all (scarecrow) because you might share our difficulties with others and make this world a less chemically drenched environment for everyone.

vertigoSo, enough with the Kumbaya-world-peace stuff. Though, I realize there is a certain amount of actualization of my previous career choice. With the isolation imposed on me from having MCS and my trying to bring awareness with this blog, I am becoming a lighthouse keeper… with vertigo. Only it’s headaches and fatigue instead of being thrown from a bell tower in a Hitchcock movie.