Going Fragrance Free When Visiting a Loved One – Video Interview

FF for Loved One Interview w Melanie ConnellWritten by Sherri Connell. Interview with Sherri, Melanie and Cole Connell.

Living with Environmental Illness is a challenge that often brings about isolation from public, friends and family.

Many loved ones feel overwhelmed by the endeavor of going fragrance free. They don’t know where to start, where to buy products and often fear making someone ill by missing something. Thus, they often avoid the issue and in turn avoid the person living with chemical intolerance.

As I tell everyone I come in contact with, using fragrance free and natural products is health choice for everyone. In other words, it can be viewed as a positive change for all, rather than a sacrifice just for someone who has an issue.

For those who for whatever reason don’t want to change out all their soap, shampoo, deodorant, lotion and hair products, one suggestion I have for people is to keep a Fragrance Free Kit.

Of course, if they want their loved one to visit their home, it will probably need to not have any air fresheners, new carpet, paint, lots of candles, carpet shampoo, stains, harsh cleaners, smokers, regular perfume wearers, etc. On the other hand, if these are not an issues, often there can be some compromise.

First, if the loved one cannot tolerate fragranced laundry products, those will need to be changed long term. These do not wash out easily and linger for many months or longer even when washed multiple times.

Second, we can purchase fragrance free shampoo, soap and deodorant. We keep this under our cabinet and pull them out to use for several showers before visiting with our loved one. We can omit other hair products, lotions, sprays, etc or add fragrance free versions to our kit.


For more information on living with Environmental Illness, the Choose Friendships Over Fragrances Campaign, resources and more: Cleaner Indoor Air Campaign

Do you or a loved one live with debilitating illness or pain? Invisible Disabilities Association

Disclaimer: I am not an expert and this may or may not work for you and your loved one. Please ask your friend or family member what they can or cannot tolerate and what will work for them. Also note that most likely alternatives will not work if there are air fresheners, new carpets, paint, stains, carpet shampoo’s etc. in the home.

About Sherri

Sherri has always been an extremely active person. She used to cheer-lead, sing and dance in musicals, act in commercials, work multiple jobs and obtained 3 college degrees. However, she has been unable to work or care for her daily needs since 1991, due to Progressive Multiple Sclerosis and Chronic-Late Lyme Disease. She lives with unbearable and disabling pain, fatigue and cognitive disorders 24x7. She also has Chemical Sensitivities, which has kept her very isolated from friends and family. Sherri is not a medical professional, please seek advice from your doctor before making any changes to your healthcare or lifestyle.

Diane Sawyer Report on Untested Chemicals in Cosmetics

Diane Sawyer, of ABC News aired a Consumer Watchdog piece, Untested Chemicals in Beauty Products?

Diane said, “It was startling to learn a number today. A hundred and twenty is the answer. 120 chemicals in care products, creams, shampoos, used everyday by women – most of them untested an a lot by men as well. Today, even lawmakers said it was time for a wake-up call …” (ABC World News, 4/30/12).

ABC Senior National Correspondent, Jim Avala went on to explain, “The average woman applies 12 beauty products to her body every day – 120 chemicals. For men, it’s six cosmetics and 80 chemicals.”

The report gave a small example of problematic chemicals such as formaldehye, dioxane, lead, parabens, mercury, toluene, diethyl phthalate (allergies, hormone disrupters, dermatitis in perfume) stating that Europe has banned 1,200 chemicals, which the U.S. has only banned 10.

The report featured the Breast Cancer Fund Director of Program and Policy, Janet Nudelman who discusses the Safe Cosmetics Act, supported by the Breast Cancer Fund and Campaign for Safe Cosmetics.

ADDITIONAL RELATED STORIES ON IDA

Creating a Fragrance-Free Zone – A Friendlier Atmosphere for Those Living with Environmental Illness

Fragrance and Chemical Tidbits Information Sheet

Parabens Found in 99 Percent of Mastectomy Tissues

Radio Interview with Environmental Engineer and Researcher

Scented Consumer Products Show to Emit Many Unlisted Chemicals

Scented Laundry Products Emit Hazardous Chemicals Through Dryer Vents

Study Reveals Unlisted Chemicals in Consumer Products

Toxic Chemicals in Fragranced Laundry Products and Health Effects

Amazing Hotel Accommodations for My Challenges

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).

Visit the Cleaner Indoor Air Campaign for more information about chemicals, fragrances and chemical sensitivities:  (a campaign of the Invisible Disabilities Association).

About Sherri

Sherri has always been an extremely active person. She used to cheer-lead, sing and dance in musicals, act in commercials, work multiple jobs and obtained 3 college degrees. However, she has been unable to work or care for her daily needs since 1991, due to Progressive Multiple Sclerosis and Chronic-Late Lyme Disease. She lives with unbearable and disabling pain, fatigue and cognitive disorders 24x7. She also has Chemical Sensitivities, which has kept her very isolated from friends and family. Sherri is not a medical professional, please seek advice from your doctor before making any changes to your healthcare or lifestyle.

My Visit to Disneyland with Chemical Sensitivities

Minnie and Sherri at the Health Care Center

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. Read more here!

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.

RELATED STORIES:

Cleaner Indoor Air Helps Disney Make Change for People with Environmental Illness.

My Visit to Disneyland with Food Allergies

About Sherri

Sherri has always been an extremely active person. She used to cheer-lead, sing and dance in musicals, act in commercials, work multiple jobs and obtained 3 college degrees. However, she has been unable to work or care for her daily needs since 1991, due to Progressive Multiple Sclerosis and Chronic-Late Lyme Disease. She lives with unbearable and disabling pain, fatigue and cognitive disorders 24x7. She also has Chemical Sensitivities, which has kept her very isolated from friends and family. Sherri is not a medical professional, please seek advice from your doctor before making any changes to your healthcare or lifestyle.

My Visit to Disneyland with Food Allergies

Sherri with Chef Nick

In 2011 I had to go to California for medical reasons. My husband and I had not been on a vacation in a very long time, so we decided to stay at Disneyland!

This was extremely overwhelming, not only because I have Multiple Sclerosis and Lyme Disease, but because I also have severe chemical sensitivities and food allergies. 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. The hotel did a fabulous job with our room! Read more here.

Gluten, wheat, dairy, soy, egg free waffle

As for addressing my food allergies, Disney was incredible! It turns out that they are very well educated about food allergies and sensitivities. Guests with Disabilities contacted Nick, the hotel’s main chef, to discuss my allergies. Nick contacted me for a list of concerns that we were able to discuss.

I have a very extensive list of food allergies, so we opted to discuss them ahead of time (that is how I got the waffle as seen on the right). However, in many cases, a guest can alert their server at the restaurant about common allergies or sensitivities and a chef will come out to discuss their options. Of course, if you go to the restaurant, Goofy’s Kitchen, like we did, you will get to meet the one and only Chef Goofy!

Wow Disney! You really go above and beyond to help guest enjoy the whole Disney experience. Thank you!

Video of Sherri interviewing Chef Goofy and thanking Disney for the wonderful time!

RELATED STORIES:

Cleaner Indoor Air Helps Disney Make Change for People with Environmental Illness.

My Visit to Disneyland with Chemical Sensitivities

About Sherri

Sherri has always been an extremely active person. She used to cheer-lead, sing and dance in musicals, act in commercials, work multiple jobs and obtained 3 college degrees. However, she has been unable to work or care for her daily needs since 1991, due to Progressive Multiple Sclerosis and Chronic-Late Lyme Disease. She lives with unbearable and disabling pain, fatigue and cognitive disorders 24x7. She also has Chemical Sensitivities, which has kept her very isolated from friends and family. Sherri is not a medical professional, please seek advice from your doctor before making any changes to your healthcare or lifestyle.

Cleaner Indoor Air Helps Disney Make Change for People with Environmental Illness

Press Release

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 cannot be changed, such as stores that carry perfumes and candles, as well as the people in the parks wearing perfumes, fragranced lotions, deodorants and sunscreens. DSGD also provided a list of rides that emit fragrances, smoke or contain chlorine. Thus, 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? 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 chemicals or 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.

Health Care Center

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.

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.

RELATED STORIES:

My Visit to Disneyland with Chemical Sensitivities

My Visit to Disneyland with Food Allergies

Toxic Mold Uproots Family’s Health and Home

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.

Chris and Andrea co-host a radio program called Building Relationships with Dr. Gary Chapman. Chris is also an author and the host of Chris Fabry Live.

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!

Read more from Andrea on CIAC.

Above video from CBN News about the Fabry’s story.


Andrea’s Video for the Invisible Disabilities Association’s campaign, Invisible No More!

ARTICLE RESOURCES:

Building Relationships with Dr. Gary Chapman

Chris and Andrea Fabry on Building Relationships

CBN News – The Hidden Dangers of Mold Exposure

Invisible No More: Andrea Fabry

MomsAgainstMold.org

Our Health Journey

Read more from Andrea on Cleaner Indoor Air

A New Look and Exciting Project for the Cleaner Indoor Air Campaign

IDA is Excited to Announce the Newly Remodeled Cleaner Indoor Air Campaign Website and New Project, Choose Friendships Over Fragrances!

The Invisible Disabilities Association originally launched CIAC in 2006. CIAC provides information about Environmental Illnesses such as Multiple Chemical Sensitivities (MCS), Toxic Injury, Chemical Injury and/or Toxic Encephalopathy, as well as chemicals and fragrances in everyday products and resources.

CIAC also provides helpful tools such as letters and posters for people to use to make changes in their community businesses, medical facilities and churches.

We have a beautiful, new website with tons of new and thrilling information, including a new project called, Choose Friendships Over Fragrances! On our page, friends and family will be given ideas on how to omit or change out products, as well as a list of products our readers like to use. Often loved ones don’t know what to do or how to do it. This project makes it simple for them.

Also as a part of Choose Friendships Over Fragrances, we have 9 incredible New Posters for individuals, businesses, medical facilities and churches.

Be sure to check out our candid Choose Friendships Over Fragrances video between two friends talking about the challenges of getting together, because of fragrances, but how rewarding it can be for everyone when loved ones make some changes.

CIAC is here to give support and understanding to those reporting these adverse health reactions, as well as make efforts to help loved ones learn how to better address and cope with these obstacles in order to restore relationships and end isolation from friends and family. However, we are not doctors nor scientists. We are not here to argue the definitions, causes or treatments for environmental conditions nor do we make claims as to cause and effect. None of our information is meant to be used as a diagnosis or health claim. Please seek the advice of a medical professional for advice and before starting or stopping any treatments.

Choose Friendships Over Fragrances

A new project was just launched by the Cleaner Indoor Air Campaign called, Choose Friendships Over Fragrances, This campaign provides awareness about Environmental Illness, information about those who report these adverse effects to chemicals and fragrances, as well as helpful tools and resources.

Research done in 2004, 2005 and 2009 by Stanley M.Caress and Anne C. Steinemann “… found that nearly 38% of Americans report adverse effects when exposed to some kind of fragranced product” (Steinemann). With approximately 310 million people in America in 2010, that is almost 117 million Americans who report adverse effects to normal, everyday products.

It is suspected that many more may possibly live with these reactions, but do not make the connection between the fragrances and their symptoms. Therefore, it is hard to determine exactly how many more people actually live with Environmental Illnesses.

Various terms are often used to describe Environmental Illnesses, such as Multiple Chemical Sensitivities (MCS), Toxic Injury, Chemical Injury and/or Toxic Encephalopathy. Many living with such conditions as Allergies, Asthma and COPD often react to chemicals and fragrances as well. Reported severity can range from mild and aggravating to severe and debilitating, with symptoms varying from coughing to closing of the throat to migraines and memory loss.

As we can imagine, people living with these conditions often experience limited access into public places, issues at work and inability to attend functions with friends and family. Regrettably, these barriers can lead to loneliness, isolation and feeling abandoned when loved ones choose not forgo the fragrances that cause these problems.

Therefore, if our loved one is telling us they are getting debilitating migraines, dizziness or fatigue from our laundry detergent, maybe we should consider simply switching it out so that they may remain a part of our lives.

Check out our latest project, Choose Friendships Over Fragrances.

■ Learn more about those living with adverse effects to chemicals and fragrances.

■ Find out how to keep these loved ones a part of our lives!

■ Get a list of Readers’ Favorite Fragrance-Free Products.

■ Share our posters!

ARTICLE RESOURCE:

(Steinemann). Steinemann, Anne C. Exposure Assessment – FAQ. Civil and Environmental Engineering, and Public Affairs. Washington University.

ADDITIONAL RESOURCES:

Cleaner Indoor Air Campaigns for the Individual, Business, Medical Facility and Church

Cleaner Indoor Air Campaign Publications

Readers’ Favorite Fragrance-Free Products

Studies Published on Environmental Illness, Prevalence, Chemicals and Fragrances

Why Go Fragrance-Free? Pamphlet

MCS Can Be Lonely

Sherri battles Multiple Sclerosis and Chronic Lyme Disease on a daily basis. She also lives with severe neurological reactions to chemicals that create synthetic fragrances. She is not alone, as millions report various mild to severe adverse health effects when exposed to chemical fragrances.

Sherri wrote on her YouTube Channel, But I LOOK Good: “Exposure to perfumes, colognes and other chemical fragrances can cause people living with Multiple Chemical Sensitivities (Chemical Injury, Environmental Illness, Toxic Encephalopathy) such debilitating symptoms as migraines, pain, vertigo, memory loss, brain damage and worsening of condition with each reaction. … Sadly, many with MCS often miss out on family gatherings, special events and even simple visits with friends and family, causing them to feel isolated and alone.”

Photo Copyright 2011 Sherri Connell. This photo cannot be duplicated or shared in any way. Published on CIAC with permission.