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Coping with the Diagnosis: You´re Diagnosed with MCS, Now What?

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Coping with the Diagnosis: You´re Diagnosed with MCS, Now What?

 

 

 

 

MCS America

Lourdes Salvador's Column

...Co-founder of MCS America discusses the latest Multiple Chemical Sensitivity issues.

 



 

 

 

 

 

 

 

Lourdes Salvador volunteers as a writer and social advocate for the recognition of multiple chemical sensitivity (MCS). She was a passionate advocate for the homeless and worked with her local governor to provide services to the homeless through a new approach she created to end homelessness. That passion soon turned to advocacy and activism for people with MCS and the medical professionals who serve them. She co-founded MCS Awareness in 2005 and went on to found MCS America in 2006. She serves as a partner for Environmental Education Week, a partner for the Collaborative on Health and the Environment (CHE), and a supporter for the American Cancer Society: Campaign for Smokefree Air.

 

For more information visit MCS America

 

 

 

Monday, October 20th, 2008:

 

Coping with the Diagnosis: You´re Diagnosed with MCS, Now What?

 

by Lourdes Salvador

 

 

Being newly diagnosed with any disease requires thought, change, and adjustment during a time when one may not be feeling their best.

 

Some diagnoses require minimal adjustments, such as taking a pill once a day to improve thyroid function or to help keep arthritis inflammation down. Other diagnoses may require some tough and scary life changes, such as sticking a finger every day to test blood sugar, injecting insulin, following a diet, and beginning an exercise regime when diagnosed with diabetes. Still others may bring news of impending death.

 

Nonetheless, few diagnoses steal life away from the living like multiple chemical sensitivity (MCS). Indeed, many cannot imagine a worse predicament to be in.

 

MCS is an acquired and progressive neurological disease induced by exposure to chemical and fragrance products that are all around us. MCS is often misinterpreted as or compared to asthma and allergies, which generally cause only temporary inconvenience and can be treated and reversed with antihistamines. In most cases, neither asthma nor allergies impacts the ability to live a relatively normal life.

 

However, people with MCS suffer progressive and cumulative harm, cognitive impairment, brain changes, and end organ damage with exposure to even small amounts of the seemingly innocuous chemical and fragrance substances found everywhere around us. If MCS progresses too far, it can ultimately result in death due to end organ failure.

 

MCS occurs as a result of the large variety of petro-chemicals on the market today that have direct effects on target organs and stimulate the human body´s natural defense against harmful agents.

 

When a person is diagnosed with MCS, life goes into a tail spin. The experienced doctor usually advises total avoidance of the fragrances found in shampoo, soap, lotion, perfume, deodorant, air freshener sprays, plug-ins, fabric sprays, household cleaning products, scented candles, laundry soap, fabric softener, and a myriad of other consumer products. Imagine for a moment what impact that would have on your life.

 

The immediate response is almost always total overwhelm. After cleaning out the bathroom and looking around, it´s entirely empty.

 

"I had no idea al this stuff had perfume and fragrance in it!"

 

"What will I bathe with?"

 

"Air freshener is in nearly every public restroom... how will I go to the bathroom?"

 

"Everyone at work wears perfume! How will I earn a living?"

 

"I sure could use a bubble bath or massage right now… but those have fragrance too!"

 

Overwhelmed? Hang on tight because it gets even worse.

 

The doctor goes on to advise that you avoid all products containing petrochemicals, which are made from petroleum. Sound easy? Think again.

 

Petroleum is not just used in gas and oil for your car. It´s used in the manufacture of plastics (cutlery, plates, toys, bottles, computers, compact discs, video tapes, electronics, etc), paint, paper, textile coatings, polyester and synthetic fibers, rubber, soaps, detergents, solvents, paint thinner, paints, drugs, fertilizer, pesticides, explosives, flooring, and insulating materials. Petrochemicals are found in such common products as aspirin, cars, clothing, and furniture. Some vinegar and other foods are distilled with petrochemicals as well. And most petrochemicals won´t be on the product label, so everything must be questioned before getting near it or using it.

 

Then, says the doctor, you must make your home a safe zone, a "clean" space. Huh??? Get rid of my TV, computer, DVD player, telephone, food, clothing, carpet, linoleum floor, and furniture? Paint? Do you know what that would cost? Are you for real? Yes, unfortunately, the doctor is for real.

 

Things happen faster than they can be addressed. Everything suddenly becomes a crisis in a world where chemicals and fragrances are everywhere and the newly diagnosed have little familiarity with how to navigate alternative solutions in a toxic world. People with MCS generally cannot access public buildings, private homes, medical buildings, offices, and places of worship without becoming ill from substances in indoor air.

 

Life, as it was known, is stripped away forever. Soothing oneself in a scented bubble bath after a long day at work is no longer possible. Curling up on the sofa by the fire can only be dreamed of.

 

Unfortunately, most people given such a laundry list of things to avoid enter into denial. This is a dangerous tactic to take. Once sensitization to a particular substance occurs, the person may be rendered sensitive to that entire class of chemicals. When this happens, the world quickly becomes smaller and each mistake can make it smaller yet.

 

Those who enter into denial will quickly realize they are getting sicker and heading towards serious disability. As toxicants and their effects build, MCS affects multiple organ systems. The entire body begins to malfunction and can even shut down.

 

People with MCS often say, "It feels as if I´m dying".

 

Primarily affected is the nervous system, but exposures also impact the cardiovascular, immune, respiratory, reproductive, gastrointestinal, and musculoskeletal systems along with the skin, eyes, ears, nose, and throat.

 

Headaches, fatigue, poor memory recall, tremor, loss of coordination, disorientation, dizziness, irregular heart beat, unsteady gait, migraines, vertigo, speech impairment, comprehension problems, personality changes, numbness/tingling, abnormal reflexes, and seizure are the most common nervous system effects that make MCS so disabling. These effects generally only occur during and after an exposure. The effects are mitigated in exposure free conditions, making avoidance of chemicals mandatory.

 

Symptoms may occur in other body systems and include chest pain, irregular heart beat, auto immune disorders, allergies, impotence, nausea, vomiting, diarrhea, constipation, gas, Candida, malabsorption of nutrients, asthma, coughing, airway disease, shortness of breath, joint and muscle pain, muscle spasms, skin disorders, infections, ringing in the ears, rhinitis, sinusitis, sneezing, and sensitivity to light and noise.

 

Those who practice avoidance quickly realize how much better they feel. Some can eventually feel totally normal when they practice total avoidance of chemicals and fragrances with proper nutrient supplementation and detoxification treatments, such as sauna. However, any slight exposure begins a downward spiral again. Victims quickly learn that MCS is a lifelong endeavor of avoidance.

 

"It feels so good when I feel so normal… I want more of that! But how do I do it?"

 

"My neighbors wash laundry constantly and the fragrant fumes drift right into my home."

 

"My employer won´t tell my coworkers to stop wearing perfume."

 

"How can I participate in my favorite sports and activities?"

 

"I can´t avoid everything, but get sick if I don´t!"

 

"I want my life back!"

 

Here are some commonly asked questions, coping strategies, and information for those with a new diagnosis and seasoned sufferers alike.

 

 

 

How is MCS Usually Treated?

 

See page one of this newsletter or:

 

View "MCS Medical Treatment" as a webpage.

 

View/Print "MCS Medical Treatment" from a PDF:

 

 

How Do I Cope With Exposures at Work?

 

If you are getting sick at work, you don't cope with it. You get accommodations. If they are not granted, you get out. Working for the money and putting up with getting sicker and sicker will only land you stuck in bed at home with no income or health insurance, or with your employment terminated for low productivity and a high number of sick days. It is essential to get out of toxic environments and plan ahead for the time when you cannot work in standard fashion, or at all.

 

Technically, a job should accommodate you when a doctor makes a request in writing; however, employers don´t always comply with the law. When an employer is unwilling to make reasonable accommodations, a lawsuit may be filed. To preserve your health, however, a determination must be made as to whether it´s worth the harassment at work to stay and/or file a lawsuit. Sometimes it is simpler, less time consuming, and less stressful to cut your losses and find another job that is a better fit.

There are some work environments that are better than others, such as ones where you can run an air filter in your own separate office and areas with windows that open.

 

Another option is to apply for management. When you are the manager, you are in control. You can enlist and enforce policies against toxic fragrances and chemicals on the job.

 

Depending on climate, outdoor jobs may work for some if the job site is not too close to cities or roads. Outdoor jobs may include being a nature trail guide, organic gardening, natural horseback instructor, security guard, and things like that.

 

Another option is to work in any capacity for another individual who has MCS. Wealthier people with MCS often advertise for home care help. These environments are often safer to work in.

 

Lastly, there is the option to become self employed and/or work from home. There are many employers who hire people to work from home on their own telephone and computer. These employers provide flexible schedules, some with regular hourly wages and others as an independent contractor. Here are a few positions to get you started (NFI, YMMV):

 

Agent, Staffing at Home

 

Agent, West at Home

 

Agent, Working Solutions

 

Blogger, PayPerPost.com

 

Call Center Representative, Accolade Support

 

Call Center Representative, Overflow USA

 

Caller Employee, Customer Loyalty Concepts

 

Chef Instructor, Chefs Line

 

Customer Care, VIP Desk

 

Customer Service, Alpine Access

 

Editor, EditFast.com

 

Expert, JustAnswer Corp

 

Freelancer, Team Double-Click

 

Guide, About .coma

 

Guide, ChaCha

 

Home Agent, Convergys

 

Independent Call Center Agent, LiveOps

 

Telemarketing, Intrep Sales Partners

 

Online Juror, eJury.com

 

Online Juror, OnlineVerdict.com

 

Online Juror, Trial Practice Inc.

 

Third Party Verifier, BSG Payments LLC

 

Virtual Assistant, Virtual Office Temps

 

Virtual Services, Arise Virtual Solutions

 

Writer, Associated Content

 

Writer, CyberEdit Inc.

 

Writer, MyEssays.com

 

And here is an agency that specializes in placing people with disability in

 

telecommuting positions:

 

National Telecommuting Institute, Inc.

 

Whatever your choice, don't wait until the last minute to make changes. The sheer struggle to survive only increases the burden carried and can be downright dangerous when health is declining and there are no viable options. Desperation is not a good place to be, particularly if family support is low or non-existent.

 

 

What Happens When I Can No Longer Work?

 

When you can no longer work, you can apply for Social Security Disability at http://www.ssa.gov/applyfordisability/.

It may take several years to obtain disability. You may be eligible to apply for welfare disability and food stamps in the interim at your state welfare office. A medical examination and certification of disability will be required.

 

It's unfortunate, but many in this situation face a reduction in the quality of living that they are used to. Some save money by moving in with family or friends, some move into state funded low-income housing, and some cannot tolerate housing at all. Those with homes can take in roommates. People with MCS are always looking for MCS safe rentals.

 

Your local helpline or welfare office might be able to direct you to other services.

 

 

How Can I Get Medical Coverage When I Can't Work?

 

Most states provide medical insurance for those with low income. Since most policies don't cover the costs of diagnosis, treatment, and care for MCS/EI, insurance has little value except for hospitalization and other conditions.

 

Similar to Medicaid, the state level insurance is provided free of charge to people who are low income. They generally put you on Medicaid until your state coverage is processed. You can usually choose from several carriers that also carry major medical insurance for the working population. You cannot be denied as long as you don't exceed the income limits on the plan. Pre-existing health conditions are irrelevant. Most states don't even ask about them on the application form.

 

The only major disadvantage is that the provider list is limited. However the hospital cannot turn you away, so many go there even for minor things. Most states have similar plans that are provided to welfare recipients, but you need not be on welfare to apply. You can even be working, so long as you do not exceed their income limits. In one state, the limits are about $1100 per month for a single person and $1400 for a single parent with one child. If your income is under that, you qualify.

 

 

How Can I Make My Home Safe??

 

See:

Dr. Grace Ziem's Environmental Control Plan for MCS Patients

 

Multiple Chemical Sensitivities (MCS), Environmental Sensitivities (ES)

 

Electrical Hyper-Sensitivities (EHS) and Housing

 

Homebuyer's Questionnaire

 

MCS Housing Resource List

 

MCSA News: Exclusive Housing Edition

 

 

What is the balance between protecting yourself from exposures and being able to go out and live a normal life?

 

This is a great question and perhaps the most important. One should not have to stop going out or stop doing what they love. But, avoiding chemicals does require rethinking "how" one does things and making some adaptations and changes. As an example, one might have difficulty walking the dog due to fabric softener fumes from neighborhood dryers. Rather than getting rid of the dog or foregoing exercise, there are many options:

 

1. Pay attention to which homes generally emit fabric softener and at which times of day.

 

2. Prepare to hold your breath as you pass them, walking more quickly. Same goes at the first sign of an unexpected exposure.

 

3. Wear a protective mask while walking the dog. In the winter, tie a scarf around your face if it makes you feel self conscious to be seen with a mask. In the summer, a bandana can be tied the same way, like agricultural workers use to keep the sun off them.

 

4. Walk the dog when and where you do now, but put a respirator around your neck. When you encounter fumes, slip the respirator on until you get past it. Drop the respirator back around your neck after you pass the exposure. You could also carry it in your hand and just press it on your face as you walk past an exposure.

 

5. If you're unprepared with respiratory protection or already short of breath and can't hold your breath, pull your shirt up over your face to reduce inhalation.

 

6. Take the dog in the car to another location where there are less exposures and walk him there (park, edge of the neighborhood upwind of the homes, shoreline, open fields, etc. Anyplace that is safer for you.)

 

7. Change the time of day you walk the dog to one where less people are washing.

 

8. Have someone else walk the dog.

 

9. Hire someone (neighborhood kid, etc,) to walk the dog.

 

10. If you have a yard, let the dog free in the yard during walk time instead. Or rotate doing that with walks.

 

11. Educate your neighbors by giving them fact sheets about the toxics in fragranced laundry products along with free samples of fragrance free versions. Well-known products like All Free and Clear Laundry Soap have cards that can be distributed with free samples. While All Free and Clear is not something a person with MCS should use, it's the first logical step for neighbors and will greatly reduce the occurrence of fragrance fumes in the neighborhood air. If retaliation is of concern, mail the samples to neighbors without your return address. Mailing several times, such as quarterly, will give people a chance to think about it and remind them to try it. If the fact sheets mention migraines, fatigue, asthma, etc... people will begin to connect their own health woes and wonder if it´s their laundry products. They will be more likely to give it a try. The results can only be positive. The clothing will be just as clean. The manufacturer may be willing to send you free samples to pass out. There are many more ideas. People with MCS just need to keep an open mind and think of resourceful and ingenious ways to accomplish the things other take for granted.

 

 

I need to travel to another state for medical care and/or work. What can I do to ensure a safe journey?

 

When flying:

 

1. Wear several layers of clothing and strip them off as they become contaminated. It's best to wear clothes you don't mind tossing in the trash as you go about your journey, otherwise you'd need a plastic bag to contain them.

 

2. Put oil in your hair to keep it from absorbing fragrance and chemicals from the air, then cover it with a hat or scarf.

 

3. Request oxygen, if required, in flight at least 48 hours prior to departure. You will need a doctor´s letter to obtain the oxygen and it costs about $100 for each flight. If you can't tolerate regular mask and tubing, bring your own and inquire about it in advance. Most airlines will now allow your own approved oxygen concentrator to be brought on board, so tubing and mask will not be an issue in this case.

 

4. Bring a gas mask respirator. Carry a doctor´s letter explaining you must wear the respirator for medical reasons. The letter should specify under what circumstances the respirator can be removed, if that is required for security purposes.

 

5. Ship some things to your destination in a box ahead of time for when you arrive so that you have clean clothes, toiletries, supplements, and medications that are sure to be contaminant-free as airport security searches may contaminated and damage the items you bring on the flight.

 

6. Arrange for someone to quickly escort you off to a safe place to decontaminate (shower, change, etc.) once you arrive.

 

7. Have a companion go with you who can stand in lines and speak on your behalf to reduce your stress and exposure levels, hence preserving your energy for the flight.

 

8. Plan on several days and as much as two weeks to recover.

 

If you are able, drive your own vehicle so that you can control exposures, rest stops, meal breaks, carry meds and clothes, decontamination supplies (bottles of water/soap/changes of clothing), and a portable toilet or jar in case a restroom cannot be found. Car camping is not all that bad if a place can be found to park. Spring and summer, depending on the area weather, is a nice time to car camp and/or tent camp along the way at a campsite. It's much safer than a hotel room, albeit a bit less comfortable.

 

There are many "green" hotels and many are familiar with MCS and will clean your room as directed before you arrive. Keep in mind that "green" means good for the environment, not non-toxic. Ask detailed questions about what a hotel uses in the rooms. Even so-called "fragrance free" rooms may use chemical products to remove odors in the belief that they are free of fragrance. Bring your own pillow and sheets. And have a nice stay!

 

For more articles on this topic, see: MCSA News.

 

Copyrighted 2008 Lourdes Salvador & MCS America

 

 

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