Taking a Look at Life from a Different Perspective

A Story of an Inspiring Woman with Multiple Chemical Sensitivities

On Friday, January 4 I didn’t put any hair product on, spray perfume, or put any hand lotion on. I was preparing myself to visit a woman in Perry County who is chemically injured (also known as multiple chemical sensitivities). I knew the visit would be an educational experience, but it was after my discussion that I realized it was beyond educational. It was inspirational, a reality-check and phenomenal all in one.

Nancy Firestone invited me into her home so I could gain an understanding of the challenges she encounters, and successes she has overcome throughout her life, as a person living with multiple chemical sensitivities.

As I interviewed Nancy, it occurred to me that she’s opened and closed many chapters in her life - just like a book. To best illustrate her story, I chose to describe her story, and provide particular quotes from Nancy.

• Chapter 1: What Does It Mean to be Chemically Injured?
• Chapter 2: The Diagnosis
• Chapter 3: A New Beginning
• Chapter 4: Adapting to Change
• Chapter 5: Making a Difference

Chapter 1: What Does It Mean to be Chemically Injured?

“Chemically injured is when your detoxification system doesn’t work properly. The person is very vulnerable to a small amount of low level chemicals, or to the heavy chemicals. It’s a disability; the challenge is avoidance.”

“About twelve percent of the population are identified as dealing with chemical injury, but it is predicted there is a higher percentage of those who have unidentified symptoms.”

“Chemicals surround us every day. For example, an average woman uses 12 personal care products, which enter the body through the respiratory system or absorb through the skin.”

“Since chemicals are constantly experienced in our environment, and I’m hypersensitive to them, I do a variety of things to assist my body: watch my diet, reduce or eliminate as many chemicals as I can in household products such as laundry detergents, personal care and cleaning products; ventilate and filter the air in my house to dilute indoor pollutants; and I jar and freeze my own food to take with me on trips.”

Part of Nancy’s diet includes alkaline foods, which help detoxify the body, and organic foods are a daily treatment. With this disability, the theory for healthy living is to incorporate 80% of Alkaline foods and 20% acidic foods into the daily diet. By using this system and breaking it down to 40% protein, 40% complex carbohydrates and 20% fats, this helps minimize the reactions as well.

Chapter 2: The Diagnosis

Multiple chemical sensitivity is not genetic; it is environmental. Nancy was aware of some of her body’s sensitivities, but it wasn’t until the year 2000, she realized how severe her sensitivities could become.

Nancy served her church as a Pastor from 1992-2000, and in 2000 the bishop moved her to Perry County. She and her husband moved into a remodeled home. As she later found out, the house had been vacant for 2.5 years with animal feces, and it had a history of flooding. After the first night in their new home, Nancy began to have reactions, which led the couple to have testing completed on the house. As a result, high levels of mold were found in the home.

Within three months, Nancy became extremely sick, so her doctor performed a Candida (yeast) test. She had a systematic reaction to it. The doctor tried to neutralize the reaction, but couldn’t. When Nancy showed him the test results from her house, he determined that the Candida, identified by the industrial hygienist in the basement insulation, was keeping her in a systematic reaction. She had been using supplements before the exposure, but the supplements were not able to protect her body from the severity of symptoms and weakness caused by the Candida.

The doctor gave her medications to try to strengthen her body. Unfortunately, the medications were unsuccessful, so the doctor recommended that Nancy and her husband move out of the remodeled house. Until a new house could be found, she moved out, forcing her and her husband to live apart for three months.

In May of 2000, Nancy and her husband rented a new townhouse. Unfortunately, they did not know she would be heading into a deeper crash. The exposure to the new building products made her body grow weaker.

Four months after moving into the home, the driveway was asphalted. This led her body to crash even further: her bowels quit working; she had chronic fatigue, inability to multi-task, short-term memory loss, and severe muscle pain. Nancy was getting worse instead of better.

“Making mashed potatoes would take me more time than a person making a full dinner. It took every ounce of energy and time to get out of bed, dress and eat breakfast. By this point it would be lunch time. The chemical load in my body was too high to take medications for the pain; they would only make me sicker.”

The following month, Nancy was scheduled to go on a youth group trip to Delaware as part of her church. Severely sick and with extreme liver pain, she was still determined to drive to Delaware. Little did she know, Delaware would be a blessing. The group lived in concrete barracks right off the ocean. With the salt water and fresh air always surrounding her, Nancy grew stronger. She returned to her husband who expressed how much healthier she looked. It was then they realized…it was time to ventilate the house. They opened windows to allow ventilation to dilute the chemicals.

“Months later we also realized I wasn’t fully able to perform my duties of the church; therefore, I went on disability leave with the church.”

One year later, the asphalt company returned to their home to blacktop the driveway again; this meant Nancy had to leave home. After four weeks, she and her husband decided it was time to move.

Chapter 3: A New Beginning

With the many experiences and hardships they faced, the couple knew they had to build a home that would keep Nancy from experiencing reactions. Since Nancy had taken disability leave from the church, she acquired more time and focused her efforts on researching the disability, and finding a new home. With her time, she discovered the American Lung Association Health House (ALAHH). They referred her to the American Lung Association of Pennsylvania. When she contacted them, she expressed her goals:

“It’s been a challenge to find the tools to educate myself on the disability, and to create a healthy indoor air quality. I want to be able to share what I’m learning for others to assess their experience, so I can help rebuild lives and do preventive care to protect the health of families.”

The American Lung Association of PA (ALAPA), met with Nancy for four years supporting her in her effort to find a builder who could build a home to fit her needs. During that time the ALAHH Builders Program was being redeveloped to become the nation’s most stringent guidelines for construction of higher level indoor air quality. Since it was not yet available, Nancy did her own research on cutting-edge building science both in the United States and Canada. When ALAHH launched their program, Nancy realized that the very people she has been studying were part of the committee that developed the Health House Guidelines. Nancy was accepted into their Builders Trainings Program.

After the training, Nancy found a builder in Perry County, whose wife had Asthma and who was interested in learning more about the program. With that interest and attitude, Nancy sent the builder to Virginia for the training, and Nancy and her husband broke ground on their new home in March 2004.

“We’ve lived here for three years now and we’ve made modifications to the home, so there’s a high enough level of indoor air quality. It’s a tight house that includes air pumping into the house to create air exchange and dilution of the chemicals.”

The modifications included: 1) Doubling the amount of air coming in for the correct amount of dilution. 2) Moving the air intake vents to a different location. They discovered that the wind blowing around the house created a stagnant air pocket near the vents. Therefore, they moved the vents to another wall. They also positioned the vents a greater distance from the ground. This brought fresher air into the house. 3) They modified the filtration system to include a series of charcoal and media filters on both the incoming and re-circulating air. This allows filters to be changed monthly. Once these modifications were completed, Nancy moved to another level of healing.

Chapter 4: Adapting to Change

“I’ve built an alternative lifestyle. I rarely eat out, but I’ve found places for alternatives, such as an organic café near my house. The owner of the café uses alternative products, and understands the sensitivities to chemicals because she has sensitivities herself. When I cook, I use fresh products and put the food in jars to then freeze. Having the food prepared, allows me to take my own food on trips or eat quickly when I don’t have time to cook.”

“If I go into an environment I cannot control, I have to think about how to reduce my load (or empty my system). Reducing my load allows my body to manage more chemicals than what I’m used to, or can control, for short periods of time.”

To do this, Nancy prepares her body by eating highly alkalized foods and drinking lots of water to empty out her system. She also monitors the number of exposures, how many times she’s left her home, and where the places are that she’s visited.

“When I prepare for a trip, I search for hotels that are allergy free. I make arrangements with the hotel to use particular products in the room; request they remove all linens in the room and bathroom; and I also take my own food. I bring my own linens that are washed in my laundry detergent. The body does the most detoxifying when you’re sleeping, so I want to minimize the most when I’m sleeping.”

Chapter 5: Making a Difference

One of Nancy’s goals was to eventually provide her experiences as an educational tool and provide a place where people with similar sensitivities could find answers.

“The number one issue we face is housing.”

Now, stronger and determined, Nancy provides a healing home for others with the disability. She’s opened her home to be a mentor and educate individuals with the disability on how to face the challenges thrown at them. Her missions are to facilitate healing and build alternative housing.

Nancy has welcomed individuals into her home for anywhere from two weeks to six months. As a mentor, she provides the amount of time needed to help the person move to another level of healing. She exposes the guests to a higher level of air quality; healing foods; proper diet; an introduction to alternative products and resources; and an alternative lifestyle is established. As Nancy welcomes people into her home, she not only provides an education on foods, air quality, etc., but also modifies the inside and outside of her home to make sure it fits the needs of the individual.

Nancy’s vision has three parts: 1) To house people short-term (3-4 weeks), within her home, so they have a break from their home and gain insight into the connection between their home environment and their symptoms; 2) To provide apartment space for up to two years. This gives healing time and insights to prepare the person to move into their own safe housing; and 3) To provide safe housing for people to move into as part of their long-term healing goals.

“I have a history with building products and a healing environment. I would like to build rental units as housing accommodations. This place will be considered ‘safe housing.’ Once people begin their healing journey in my home, they need safe housing to continue their progress; people returning to their home regress. Challenges of pesticides, fragrances and deodorizers, as well as mold and chemicals from building products embedded in the history of homes, make it difficult to find safe housing alternatives.”

By Nancy providing rental units for the chemically injured, the challenges that the person faces living in a mold or chemical induced home will be decreased. The rental unit will be built and prepared for individuals with multiple chemical sensitivities.

Throughout this experience, Nancy has met other individuals and organizations who are making a difference and willing to educate themselves and their group(s) on the chemically injured disability.

“As part of my education and mentoring program, I’m providing training and advocacy to organizations, such as CILCP. This allows organizations to fully understand the disability and how CILCP can make accommodations for its consumers. CILCP will also support me in finding funding for my future apartment units. I’m very excited about this relationship, and it’s great to find people who want to learn and educate others about the invisible and rarely heard of disability.”

Megan Kurtz, Editor

 

Expanding Services While Increasing Overall Wellness

Get Fit in the New Living Well Fitness Center

For most of you, this is the second or third newsletter you’ve received, so you’re becoming more familiar with the Living Well With A Disability program and services offered. Or perhaps you’ve browsed the Living Well Web site to gain more of an understanding of why this program was created. As we continue to distribute the e-newsletter, we remind everyone of the goal of this program: for people with disabilities to LIVE WELL; whatever WELL may mean to that person.

Understanding first-hand what individuals with disabilities face day to day and the goal of Living Well With A Disability, The Center for Independent Living of Central PA (CILCP) discovered another way to build on the Living Well program and increase individuals’ overall wellness and health.

On February 1, 2008 CILCP will celebrate the Grand Opening of the first, fully-accessible fitness center in Central Pa. for people living with disabilities. The new fitness center will be available to CILCP staff and consumers on February 1. The fitness center allows persons with diverse disabilities to participate in some type of physical fitness routine that will increase their overall wellness. The facility has many pieces of equipment available including the M103 - ADvAntage Trainer, Flexiciser, Elliptical Machine, Stationed Bicycle, leg lift, barbells, and much more.

The M103 ADvAntage trainer meets the requirements of the American Disabilities Act for Equal Program Access. This piece of equipment features four weight stacks, which provide over 20 different exercise patterns to work every upper body muscle group. Four people can train at the same time in less than 120 square feet.

The M103 provides full support features for individuals utilizing a wheelchair, including multiple grip handles, easy entry/exit, and allows you to work your chest, incline, triceps and shoulders.

The Flexiciser can eliminate many problems that people living with disabilities encounter including bad circulation, spasticity, edema, muscle atrophy, swelling in lower limbs, stiff joints, and potential infections from cuts. The Flexiciser is designed for the paraplegic and quadriplegic as well as individuals who are unable to maintain movement through natural means; it provides passive, resistive and active movement.

The Flexiciser works by simply wheeling up to the unit, strapping your feet to the pedals and turning it on. The control panel has a 60 minute timer, a speed control 0-60 RPM and an on/off rocker switch at your finger tips. Arms, legs and trunk are moved in a smooth, steady and coordinated walking motion. It can be used passively or manually with up to 60 lbs of resistance on the arms for maximum strengthening.

The Living Well Fitness Center is located in the Center for Independent Living of Central Pa. office building at 207 House Avenue, Suite 107, Camp Hill, Pa. 17011 and is open to CILCP consumers and staff. Shortly, CILCP will open the fitness center doors to the general public. The Living Well Fitness Center was made possible by the CILCP Board of Directors, and a gracious donation by David Reager, CILCP board member and local attorney.

We welcome you to join CILCP and members of the community in the Fitness Center Grand Opening on February 1, 2008 and enjoy the many vendors and participants available to help you live well!

From 12:00 – 6:00 p.m. experience:

• Demonstrations of the M103 - ADvAntage Trainer and the Flexiciser (1:00 p.m.)
• Therapeutic massages
• Talks with a personal trainer

From 12:00 – 3:00 p.m. receive:

• Information on self-breast exams, mammography and breast health
• Healthy living for diabetics
• Free foot makeovers
• Blood pressure screenings
• Retinal screenings to detect potential eye problems
• Screenings of the face to detect areas of sun damage
• Computerized cancer risk assessments

Take some time for you, and come enjoy the Living Well experience!

It’s Time to Hit the Slopes

Visit Ski Roundtop for some fun in the snow!

Some of us may enjoy the warm weather and sunny beaches! But for those who enjoy the snow, and want to try something new and fun, hit the slopes this year at Ski Roundtop in Lewisberry, Pa.

Ski Roundtop is in its third season of providing adapted snow skiing to people of any age with any type of disability. With support from Ski Roundtop, the Baltimore Adapted Recreation & Sports (BARS) provides adaptive lessons for a fee of $45.00, which includes the lift ticket, a 2.5 hour lesson and adaptive equipment. Depending on your level of skiing, you can hit the beginner slopes, or more advanced slopes. The company provides various types of sit down equipment including mono-skis, bi-skis, and twin-skis to accompany you as you glide down the hills of Ski Roundtop.

A snow slider is also available for individuals who are able to stand with support. Through BARS and Ski Roundtop, they can also provide four-track and three-track skiing. Four-track skiing allows you to stand up with two skis and two outriggers. Three-track skiing includes one ski and two outriggers. Outriggers are adapted forearm crutches that have ski tips mounted on the bottom. They assist the skier in stability and turning.

If an individual requires stand-up rental equipment, it is an additional $35.00. The remaining equipment is provided by BARS and included in the fee. A variety of teaching aids are available for stand up skiing to ease the learning process.

Lessons are primarily taught on Sundays and based on availability during the week. The organization is volunteer-based; therefore, there are about 12 volunteers available on a regular basis and additional volunteers available as needed.

So whether you’ve been skiing for years, or want to fulfill that 2008 resolution to LIVE WELL, schedule a ski lesson! For more information or to schedule a lesson, call BARS Executive Director, Pamela, at 443-491-3227 or email her at pam4bars@aol.com.