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I live with Multiple Sclerosis and Lyme Disease. I get extremely ill from chemicals in cleaning products and synthetic fragrances. This is not rare, as millions report mild to severe reactions to these (even more so with those living with chronic illness, asthma, allergies, chemical sensitivities, cancer, autism, PTSD, migraines, etc). Other than Disney hotels, I have been unable to stay in a hotel for over 10 years due to air fresheners, cleaners and sprays.
Just before Christmas, my brother passed away, so we needed to go to Grand Junction. From several previous failed attempts to find a place to stay anywhere in the area, we were quite scared to try again, but it was imperative that we find a place to stay.
We certainly did not need a hotel as fancy as the Colorado Wine Country Inn, but had exhausted all of the other options and chains. When I called the manager of this hotel (Jerome) and went through my very lengthy list of qualifications (no smoking, no air fresheners, no sprays, room can’t be near laundry, exhaust or outside smoking, etc), he didn’t even blink an eye. He was happy to answer my questions. Once we decided to make a reservation, he didn’t mind cleaning our room and linens in baking soda and vinegar!
The trip there was nerve-wracking as we had to go and we couldn’t just sleep in the car! We also had my mother with us who is battling lung cancer. When we arrived, my husband went in to check out the room and soon waved us in! We were greeted at the door by Joe and found our room to be fabulous!! The room was clean and comfortable and they had a very nice condolence card for our family signed by the staff.
Another great thing I would like to report is that the chefs were well versed in gluten sensitivities and were also able to accommodate our other food allergies.
HOWEVER! Although the room was absolutely fantastic, I do have to share the negatives and warnings about the things we did encounter for others who live with chemical sensitivities, toxic injury, asthma, allergies, etc.
1) They do have an automatic air freshener in the public restrooms off of the lobby (but none in the lobby, halls or rooms). They will be receiving a nice letter from my husband with information about the chemicals in these units, along with several alternatives based on the information found in this website, the Cleaner Indoor Air Campaign.
2) Even though they use a low chlorine type hot-tub, a slight to moderate chlorine smell is in the lobby and lower levels.
3) The neighbors in the winter use wood and pellet stoves; we did not detect this from inside the room, but could when going outside or opening the windows when it was cold outside.
4) This in is in the middle of vineyards, in which pesticides are used in the spring and summer (we went in the winter).
Even with these hurdles, we were able to secure ourselves in the room and get a good night sleep. None of the other hotels my husband tried stepping into in the area were even a slight possibility.
We cannon thank the Colorado Wine Country Inn enough for taking such great care of us!!
WARNING: I can’t guarantee how your experience will be at this hotel or any other. Please try ay hotel at your own risk after calling to ensure they do not use what you cannot tolerate, asking them to make accommodations and having a back-up plan in case it doesn’t work out! We went through all of the proper steps last summer, but still could not tolerate the room whatsoever.
TIDBITS: Nearly 38% of the population reports some sort of adverse health effect from chemicals in fragrances. Approximately 15% or more knowingly live with chemical sensitivities; it is suspected that many more do as well, but do not make the connection between their symptoms and the source. According to a 2010 study, of the 133 VOCs found in 25 everyday products, “24 are classified as toxic or hazardous under U.S. federal laws and each product emitted at least one of these compounds” (2010 Anne Steinemann, Ph.D).
When we left our home in October 2008, we brought our cars. We didn’t have much choice. In retrospect I might have agreed to borrow a car until we could figure out a course of action, but we were consumed with finding shelter and replacing necessities.
We vacuumed and wiped them with white vinegar.
Within a couple of weeks we noticed that our symptoms increased when we rode in our 9-passenger Suburban. My worry about cross-contamination increased as well.
In the end we discovered we hadn’t cross-contaminated. According to testing performed later, the cars were clean. But our symptoms were heightened when riding in the Suburban. We simply had to replace it. Most people could tolerate the car just fine, so 6 weeks after we left our home we traded it for a used Honda Odyssey with leather seats. That car felt better. Our headaches and congestion improved. We kept our second car, a Honda CR-V, and tried to use it as little as possible.
In December 2008, I traveled to Arizona with several of our children. Slowly the rest of the family followed. Our three oldest daughters relocated, then our high school senior, Ryan. Four vehicles came with them.
We noticed adverse reactions when riding in any of our old cars. Our multiple chemical sensitivity kicked in shortly after vacating our home. Therefore, any air fresheners or chemicals previously used were no longer tolerated.
We found ways to cope with our older vehicles. Regular HEPA vacuuming helped, and so did wiping down the inside with *tea tree oil and other essential oils. Changing cabin filters might have helped. Here’s what one allergy-friendly website says about cabin filters:
What is a car cabin air filter?
Many car owners don’t even realize that such a part exists in their vehicles, much less if it ever needs to be changed. But, no matter if they know it or not, a cabin air filter is an essential part of your car’s ventilation system that removes pollutants from the air before they get inside the passenger compartment. They were originally designed to remove solid contaminants like dust and soot from circulating inside your vehicle, but can now also absorb gases and odors. Cabin air filters may also be known as passenger compartment filters, interior ventilation filters, pollen filters or dust filters.
Why are the cabin air filters used?
It is an undisputed fact that roadways (especially major highways, especially during rush hours) are some of the major sources of air pollution. Therefore, as you are driving, you are forced to breathe the air tainted with exhaust fumes, dust and soot particles, many of which may pose a serious hazard to your health.
The cabin air filter is there to prevent all those pollutants from entering the passenger compartment.
Why and how often should you change the cabin air filter?
Eventually, a cabin air filter starts to lose its effectiveness, as it gets dirty with use. This may result in unpleasant odor, and decreased heating and air conditioning performance caused by restricted airflow through the filter.
It is recommended to replace the cabin air filter at least once a year or every 12,000 to 15,000 miles – more often if your vehicle is operated primarily in areas of heavy pollution or dusty conditions.
Are cabin air filters difficult to replace?
Cabin air filters are typically located under a vehicle’s dashboard or attached to the glove box. Others may be located in the engine compartment. In nearly all cases, cabin air filters can be changed in as little as 10 minutes.
For instructions on replacing the cabin air filter on a particular car model, go to the Car Cabin Air Filters Main Page and find your vehicle under the appropriate category.
Despite all of the filtration options, it was clear that we needed to replace our vehicles. It took more than two years.
Yesterday afternoon we sold the last car from Colorado. It’s been a slow, arduous process. Finding affordable, used cars with no history of air fresheners, chemicals, or mold has not been easy.
The sale of this last vehicle marks the end of a chapter. The old life is slowly passing. Somehow it also feels like a new beginning.
*Please note that many with chemical sensitivities also react to essential oils and/or vinegar. Seek advice from your medical professional before trying any new products or tips and use with your own discretion.
Transitioning to a new environment brings with it a level of stress and anxiety. How can we be sure it’s mold-free? What about the chemical aspect?
The apartment was worth pursuing since it was all electric and only a year old, with no history of water damage. During the walk-through we detected only a faint chemical smell. No plug-ins, no heavy fragrances, and no musty smell. A good, safe home environment should smell like nothing.
The good news about our condition is that our bodies let us know immediately if there is a serious mold issue, something I’ve encountered three times since leaving our Colorado home. All three times I felt a painful tightening in my chest, which took several days to resolve.
Our next step was to inquire about pesticide sprays. Aside from the initial termite spray used during construction, the apartment had not been sprayed indoors.
Although there was no sign of water damage, we decided to have the apartment inspected using thermal imaging. Infrared thermal imaging will detect hidden areas of moisture. It can also spot structural defects and any potential electrical hazards.
According to this website dedicated to thermal imaging:
Thermal imaging inspections provides us with a picture of a specific condition of a home or building. Infrared cameras allow us the ability to see and locate what the naked eye is unable to detect. Infrared images can capture thermal anomalies from moisture or water damage, roof leaks, stucco, EIFS, chimney staining and window leakage. Infrared Scans are able to locate water and moisture intrusion in buildings by thermal patterns.
Our inspector invited our 11-year-old son to put his hands and feet on the wall to demonstrate the heat-detecting capabilities of the machine.
A thermal imaging inspection can range in cost from $100 to $400, depending on the size of the dwelling and whether or not a full inspection is performed.
Here are some things we did to help remedy the chemical smell:
-Placed activated charcoal in open cups throughout the apartment. Zeolite can also be used.
-Cleaned thoroughly with white vinegar.
-Diffused essential oils like lemon and tea tree oil (Be aware that many with MCS cannot tolerate essential oils; use at your own discretion).
-Ran our air purifier (we like the Austin).
The kids are doing well in their new environment. The only question remaining: Who gets the empty room at our house?
Earlier this year (2011), my husband and I had to take a trip to California for medical reasons. Since we were already going to be there, we decided to first stop in Disneyland for some much needed fun!
This was a huge endeavor, not only because I have Multiple Sclerosis and Lyme Disease, but because I also have severe chemical sensitivities and food allergies. Turns out that they were extremely knowledgeable about food allergies, so that was awesome. Read more here!
The biggest fear was that we had never taken a long road trip and we had no idea if I would even be able to stay in a hotel, because of all the chemicals commonly used to clean them. However, they were extremely helpful regarding the room! In fact, they are accustomed to cleaning rooms without chemicals for those who request it and they even have linens and towels that have not been washed in fragranced detergents.
Even arranging all of this, it was a gamble, because the regular use of chemical cleaners and sprays usually linger in carpets, walls and beds. Nonetheless, I am elated to report that the room was delightfully wonderful! I didn’t notice and residuals at all!
The only issue I had was when the housekeepers cleaned the room below me, it wafted up into the vent. We shut it off and left the room. It was fine later.
Of course there were other concerns that could not be helped, in which I had to take care to avoid. For example, housekeeping carts and other sprays in halls. Also, being exposed to laundry detergents, soaps, lotions, deodorants, sunscreens and more from the people in the parks. So, we scheduled the stay during a very quiet time and thankfully I only ran into it briefly a couple of times. In addition, there are rides and shows that have fragrances emitted; but the accessibility crew helped us map those out so that we didn’t go near them.
Finally, the last concern on the agenda were the air fresheners in the park restrooms. Since I am unable to enter a bathroom with those in it, I wouldn’t have have anywhere to go.
My husband was able to share information with them about chemical sensitivities, asthma and allergies through the Cleaner Indoor Air Campaign. After Disney reviewed the statistics and details, they removed the automatic air fresheners in all of the Health Centers in all of the Parks in both Disneyland and Disney World for the sake of those with environmental illness! Yay! Read more here!
Please note, there are still other fragrance chemicals in the park. I am only writing about their removal of the air fresheners in the Health Centers and how they accommodated me for my stay. I can’t guarantee how your experience will be at Disneyland or at any other hotel or resort. In fact, after our wonderful stay at Disneyland, we booked a hotel so that I could visit family I had not gone to see in over 5 years. Even though they claim they cleaned with the products and did not spray anything, the room was thick with chemicals. We had to pay for the room even though we immediately left. My husband drove up and down the road checking out other hotels, but none were tolerable! It was a nightmare!
Video above of Sherri interviewing Pluto and Minnie and thanking Disney for all they did.
Cleaner Indoor Air Campaign Helps Disney Make Change for People with Environmental Illness
Parker, CO – October 10, 2011. Taking a trip or vacation can often be challenging with all of the planning and packing that goes into it. However, traveling with a disability can be extremely stressful and overwhelming. In addition to the usual clothing and other items, many have to take such things as medications, wheelchairs, linens and special foods.
What’s more, traveling and going into public can be virtually impossible for many living with chemical sensitivities and environmental illness. Not only do they often have to avoid exhaust, paints and smoke, many cannot tolerate perfumes, other fragranced items and/or cleaning products.
Since chemicals and fragrances seem to permeate public areas, most often even attempting to travel is out of the question. On the other hand, if enough strategic planning and efforts are made, it may be possible in some cases. There are no guarantees the adaptations and requests for accommodations will pay off. However, often taking the possible risk outweighs the continued isolation, as long as proper research, preparations and arrangements are requested and a Plan B is in place.
In 2011, Invisible Disabilities Association President, Wayne Connell needed to take his wife Sherri to California for medical reasons. She cannot tolerate an airplane, so they decided to venture out in their car. They had never taken a long road trip and in order to do this, they had to take special air purifiers, masks, oxygen, sheets, towels, blankets and more. Their biggest obstacle was finding a place to stay. Hotels had always been out of the question, because of the cleaning chemicals they use in the rooms, on the linens and the air fresheners often used in the lobbies.
Even so, Wayne and Sherri had to figure out how to make it work. Since they needed to go to California, they decided to stop in Disneyland first. Wayne got into contact with Domestic Services for Guests with Disabilities (DSGD) who made contact with the hotel and provided information about the grounds.
Certainly, there are many situations that could not be changed, such as stores that carry perfumes and candles, rides and exhibits that emit fragrances or smoke, as well as the people in the parks wearing perfumes, fragranced lotions, deodorants and sunscreens. Therefore, DSGD also provided a list of rides that emit fragrances, smoke or contain chlorine, which was very helpful. As a result, those things had to be avoided and travel plans were made during a very slow time of the year to avoid people in the parks, stores and restaurants. They also contacted the hotel’s housekeeping manager and the head chef regarding Sherri’s food allergies.
Was it actually possible to make the room accessible for Sherri? It turns out that Disney is not new to hosting people with chemical sensitivities, allergies and asthma. They have sheets and linens set aside that have never been washed in chemical fragrances and they are happy to clean the room with baking soda and vinegar and omit any sprays. The hotel was also asked not to spray anything in the halls during their visit, in which they complied. All of the restaurants and chefs are also familiar with various food allergies and sensitivities, where guests are welcome to discuss their concerns ahead of time (with the hotel’s head chef) or when they arrive at a restaurant.
Finally, there was the matter of the automated sprayers in the bathrooms, which are often used by businesses. As you can imagine, for those who become very ill when exposed to these, being unable to use a restroom in a large park such as this can create a barrier from the park itself. Thus, Wayne requested they shut off the emitters in one bathroom of each park during their visit. He also provided information from IDA’s Cleaner Indoor Air Campaign regarding the prevalence of chemical sensitivities, asthma and allergies, as well as how the sprayers can pose a blockade of accessibility to the restrooms and parks.
Concerned for the vast numbers of people affected by units in bathrooms, Disney reviewed the information and decided to not only shut them off for a week, but to remove them permanently from the Health Care Center restrooms in all of the parks for both Disneyland and Disney World!
IDA was extremely thrilled to be a part of this ground breaking measure to tear down these barriers for thousands who would like to enjoy the Disney parks!
Disney is doing an amazing job with their incredible hospitality and outstanding accommodation efforts. Nonetheless, please keep in mind that no theme park can guarantee comfort and accessibility for all concerns and situations.
NOTE: We are not claiming that these parks and hotels are fully accessible to people with chemical sensitivities. We are only reporting on their action to remove the air fresheners from the Health Care Centers, as well as the hotel and chefs’ efforts to make the stay possible for Wayne and Sherri. Please call ahead of time to make sure the air fresheners are still removed in the Health Care Centers before you make your plans. Also, keep in consideration of the hotels, rides and exhibits that spray fragrances. Request a list. Discuss possible barriers with the hotel, your needs and determine if you think it may be possible for you to stay there. Also, be aware of the guests who use fragrances, fragranced products and sunscreens. Make a determination if you are able to visit Disneyland or Disney World, based on your personal medical conditions, chemical and food sensitivities or allergies.
ABOUT THE INVISIBLE DISABILITIES ASSOCIATION
The Invisible Disabilities Association (IDA) is a non-profit organization that has been encouraging, educating and connecting people and organizations touched by invisible disabilities around the world since 1997. IDA provides awareness, articles, pamphlets, booklets, radio interviews, videos, seminars, events, resources, an online social network and much more.
Contact the IDA Team: The Cleaner Indoor Air Campaign was launched by the Invisible Disabilities Association (IDA). Go to the Contact Page on the IDA website. Visit the IDA at: www.InvisibleDisabilities.org.
Chris and Andrea Fabry were living a wonderful life with 9 children in a gorgeous home, surrounded by the beauty of Colorado. Yet, the Fabrys could never have been prepared for what was about to happen.
In 2007, they discovered mold in behind a shower, adjacent to their bedroom, then in 2008 they found more under another shower. Each time, they had the mold remediated, but unexplainable, declining health issues continued amongst the kids and even the pets. In October of 2009, they had to evacuate their home and abandon their possessions.
Since that time, the family has been living in Arizona and diligently working on recovery. As a former journalist, Andrea shares their stories, progress and what she learns in order to help others going through the same struggles: Our Health Journey and momsAWARE.
We are elated to announce that Andrea just joined the Cleaner Indoor Air Campaign as a blogger. Welcome, Andrea and thank you for caring about others living with mold injury and other environmental conditions!
Above video from CBN News about the Fabry’s story.
Andrea’s Video for the Invisible Disabilities Association’s campaign, Invisible No More!
The term, Environmental Illness, is generally used to describe a number of mild to severe health responses to the environment, whether it be such things as: food, plants, animals, smoke, smog, chemicals or electromagnetic fields. Most people are familiar with allergies to our surroundings that can range from mild seasonal allergies to trees and grasses to severe anaphylaxis to peanuts. Many people even know how asthma is a closing of the airways that can be triggered by many different … [MORE]
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