How I Cope With MCS

While every person with MCS is unique and has their own individual sensitivities, I thought I would give a little information on what *I* have done to cope with having MCS. Remember, these are suggestions that work for ME--they may not work for YOU.

What do I do about. . .?

. . .Washing my hair?
I use Granny's Old Fashioned shampoo and conditioner (available from N.E.E.D.S.(needs.com) )--see the "Sources" page), which are unscented and have no formaldehyde in them. As soon as I get the products, I put them in glass bottles to prevent the plastic from leeching into the liquid and smelling to high heaven!

A friend of mine who has MCS and dandruff has found that she can keep her itchy scalp under control without using smelly and expensive dandruff shampoos by applying a solution of (what else?) diluted white vinegar (1:1 vinegar to water, perhaps a bit more water if you like), letting it sit on her scalp for about 5 minutes, then rinsing it out. Apparently, the acidity of the vinegar gets to the flaky skin and it just goes down the drain! I have oily hair, so I have not tried it, but if anyone DOES try it, please let me know if it works for you, too. I'm curious to find out if it's just HER or if it will work for everyone.

Note: Granny's has done something funky with their shampoo formula and it now smells like plastic. Instead, I use a product from AFM called "Satin Touch Head & Body Shampoo." It's available from needs.com).

. . .Dry and cracked skin?
Boy, do I wish I had found this product decades ago--pure lanolin!!!! Combined with a loofah in the shower to remove dead skin cells, slathering this totally natural product (it's a thick, rich moisturizer from sheared wool, usually used by new nursing mothers to help with cracked and sore nipples)works miracles. You can buy it at most drugstores, baby stores, or you can order it. I happened to find that ordering it from (a href="http://www.vermontcountrystore.com">The Vermont Country Store (info about this store is also on the CATALOGS page) saved me a lot of money. I got a great deal--about $8 for 4 oz. (I paid about $15 for 2 oz. at the local pharmacy--you do the math. I'm sure there are many other places to find this stuff at a good price). I found it in both a creme and a liquid form, too. It is completely unscented and free of preservatives. The liquid might be good to pour into a small bottle to keep in your purse (those airline liquor bottles and a small funnel are GREAT for all kinds of purposes, from your own hand lotion to your own hand soap). A pair of cotton gloves or socks keeps the lanolin on dry, cracked skin overnight to aid healing. I was amazed at how well it worked on the dry skin on my heels, provided I wore some socks and scrubbed the skin off with a rough item when I took a shower (I use those cheap green dish scrubbies--they work quite well and are cheaper than "official" foot care products. Small vegetable scrub brushes with natural fibers work well, too--look in the kitchen section of any store.) . . .A shower curtain?
I buy the cotton duck shower curtains (available from several sources--check N.E.E.D.S (needs.com) and "Our Toxic Times"). They are too long for my shower, so I have to cut the bottom off and re-hem it. I also live in an area that has hard water, and the off-white cotton invariably gets stained. Bleach makes the brass grommets come out of the fabric, so I have learned to tolerate the stains and be grateful that the curtain is not vinyl. When I can't be grateful any longer, I buy a new one.

. . .Soap?
I don't have a problem with Dove unscented soap. Neutrogena also makes a pretty good unscented soap, but I find it to be very drying. I got some samples of Orange Glo soap and hand cleaner, but I have not tried them yet. I'll keep you informed. The hand cleaner has a pretty strong smell in the bottle, but it may wash off okay. I'll contact the company to see what ingredients are in it. I bought some little airline liquor bottles, poured out the vodka, and use the bottles for carrying around various liquid items, such as liquid soap or even some water in case I need to take a pill; just be sure to mark the bottle CLEARLY so someone doesn't mistake it for something else (Yes, this has happened to me, and in a public place, too; it wasn't a pretty sight, nor a pleasant feeling, as I took a good swig of diluted soap to wash down a sodium bicarb pill, thinking it was water. I didn't know I could heave that much! 'Tis NOT a pleasant memory. . .)

. . .Haircuts?
I get seizures when I get around hairspray and the wonderful woman who styles my hair has agreed to be flexible with me (meaning: she was tired of dragging me to my car to get me out of the building). She now comes to my home, which is in the same neighborhood as her salon and her babysitter, and cuts it here. I get a style that doesn't require any gels or mousse, and just get on with life. I am thankful that she has known me for years and has agreed to help out like this. Yes, I do have to pay extra and I have to clean up the hair off of my carpet, but it's worth it. She is a gem and a very kind person. I give her homemade cookies to entice/thank her, too!

Update: my wonderful stylist got a job at a salon filled with hairspray and perm lotion. I have found that if you go to a SuperCuts (or similar establishment) FIRST THING IN THE MORNING, they are usually not busy, ESPECIALLY if you go the first Tuesday after a Monday holiday. Choose a seat away from everyone or by the door if you can, choose a simple style that doesn't need mousse or hairspray on a regular basis (you can make hairspray by mixing plain gelatin and HOT water in a spray bottle--be sure you clean the bottle IMMEDIATELY after each use! This really works, folks, no kidding!), get your cut and get out the door with a pleasant good-bye! If you can stand the chemicals, do any highlighting at home; see if you can find a friend who has had experience with this before trying it yourself. The SuperCuts person may even do a little work on the side for you if you let your needs slip out when the manager isn't listening! The end of the day is also a good time to pay them a visit. I have yet to ever go in there and see more than two customers. They often run specials during the lunch hours (it's mainly a place for men to get a quick trim, so there is very, very little hairspray used in such places), so be smart and stick to the "off-peak" hours (NOT 11:00 to 2:00). It's a pretty darn good deal if you have a simple style!

. . .Laundry?
I don't have laundry facilities in my building, so I used to take my clothing to the laundrymat across the street. I used to give them my own soap (Arm & Hammer Unscented or All Unscented--a liquid is better, since it rinses out better; NEEDS and Orange Glo also have some VERY good unscented detergents (a warning about the Oxyclean detergent from Orange Glo--when they say it's concentrated, they mean concentrated! My kitchen floor got an unexpected cleaning when I failed to read the box and recommended amounts.). White vinegar is an excellent fabric softener, too--use about 1/4 to 1/2 cup just like any other fabric softener, and there is NO residual vinegar-y smell in case you were wondering) and they had it done in a day. I got it as soon as it's done so it wouldn't absorb the odors from the other scented clothing in the building. I made it a point to learn how to say, "Hello" in the laundrymat owner's language (Korean) as a gesture of goodwill. That has gone a long way, and I learned something new!

You might also try to find an apartment sized washer/dryer if you live in an apartment (I did this--the washer hooks up to the kitchen sink and the 110v dryer is in the living room, holding up the bird cage); they are amazing affordable at Sears, and you can save a LOT of money if you let your clothes dry on racks and just use the washer for a quick tumble to soften them up a bit. I bought metal racks at Target because I kept breaking the wooden ones; I did have to tape the sharp corners, though, so they wouldn't snag any delicate clothing. MAKE SURE you have a plumber check the size of the drain lines to make sure that they can handle the volume of water; you usually need a 2" drain line for a small to medium washer.

. . .Visiting friends/family?
The answer is not a good one--I don't if I can possibly help it. They must come here to my home, and I make sure that I tell them in advance that they must be prepared to leave if I tell them that they have on something that bothers me. If they do come to visit, I make sure to call them well in advance and diplomatically give them instructions about how *I* need them to prepare their clothing and hair if they are coming to visit. I post a sign on the door stating such, so everyone has fair warning! I am firm about people not staying if they smell. I can no longer go into my parents' house or give them a hug because my father smokes; that's life. If I want to see some one outside of my apartment, I make arrangements to meet them outside and I make sure that I have access to my car (where there's a good Aireox air filter), a safe haven where I can breathe clean air and leave when I'm ready. I don't apologize for this any more than a diabetic should apologize for not being able to eat sweets. I always make sure that I have an "out"--either by car or by dismissing from my home people who smell. Unfortunately, this is a pass/fail situation--there is no "halfway" to not smelling, and not everyone will understand or be pleased with your position. You can be meek and be sick, or you can be "benevolently self-interested" and breathe.

. . .New furniture?
I try not to buy brand new furniture or appliances (like vacuum cleaners--the plastic wands on them can really smell), as the foam in the cushions are filled with formaldehyde. I look for used furniture that doesn't smell of cigarette smoke or perfume and have it steam cleaned with white vinegar, lemon juice and grapefruit seed extract. If it still smells, I cover it with 1 mil of plastic and put a cotton cover over it and deal with the ugliness of it. I can sit on an ugly chair and mope about the poor aesthetics or I can have a nice new piece of furniture that gives me asthma attacks; this is a no-brainer. Leather furniture is out of the question, due to the tanning chemicals--I had to sell all of mine, as I couldn't stand to be near it. I bought a used cloth recliner, and it took a full year before I could sit in it, due to the fact that the person who owned it before me used scented shampoo and some sort of mousse or other hair goop. It's fine now, but I was quite angry about not being able to sit in it for a long time.

A mattress without fire-retardants can be purchased from Crown City Mattress, 11134 Rush St. South El Monte, CA 91733-3582, (626)452-8617, provided you have a doctor's prescription. This SHOULD be covered by your insurance, but there are no guarantees. A full size set will cost around $1,500, plus shipping. Friends tell me that it is well worth the money. A cheaper alternative is a cotton futon, but these can smell also and are VERY firm; try to get a mattress that has been on the showroom floor for a long time and has outgassed, no matter whether it's a futon or a a regular mattress. I'm not being paid to say this, but if you can afford it, a Sterns & Foster mattress is a good alternative if you don't want to buy a set without trying it first. This line uses a special kind of cotton that doesn't have all the fireproofing chemicals that cheaper mattresses do; you WILL have to deal with the required fireproofing that they spray on the top, though (if anyone can find a way to get around this, PLEASE let me know!). I tried the floor sample at the store, and it had NO smell and was fantastically comfortable; when I asked how long it had been on the showroom floor, I was told it was there for about 2 to 3 months. Now, if you can talk the dealer into keeping in storage with the plastic off and then get it home and place it in the sun for a few days, you may have a high-quality bed that will last for at least 15 years that you KNOW is comfortable. If you STILL can't tolerate the smell, then buy some barrier cloth (at least enough to cover the head area) until it outgasses. Be patient. I need a VERY soft bed, and I just couldn't buy one without trying it out first. I got lucky and had a terrific, helpful salesman who was willing to work with me and hold it at the store for a month or so. I look forward to sleeping in a bed again instead of my recliner. Don't forget to call your local Salvation Army or other charity to take away a mattress you may not need anymore.

. . .A mask of some sort?
I have some suggestions for you that may help. There is a company called Lab Safety Supply that sells a wonderful half-face mask with replaceable charcoal filters that get rid of fumes. Their phone number is 1-800-356-0783. Ask for a catalog, as they have all kinds of good stuff for us if you look hard enough. You can find anything from a simple half-face mask to a self-contained unit that has a hood on it. There are several good masks, so I won't tell you which one to pick; I will tell you that whatever you get and if it's plastic, you will have to soak it in baking soda for a few days and let it outgas for a month or two, since it will smell a bit of plastic (but they're not too bad). The technical reps are usually more than happy to help you find what you need. As for oxygen, you can probably get your doctor to prescribe it, BUT you CANNOT use it while a plane is taking off and sucking up all those wonderful fumes from the plane in front of yours. After you are in the air, you can use it as much as needed; check with the airline before you fly, as some companies will supply the oxygen for free, some will charge for it, and you MUST confirm that they have the oxygen before you get on the plane--you don't want any unpleasant surprises. I recommend calling needs.com) (see SOURCES) and getting a ceramic face mask and Tygon tubing to avoid vinyl tubing and more nasty plastic. If they don't have these products, they will tell you where you can find them. There is only one size of ceramic face mask and you must find a way to attach it to your head in a way that is comfortable for YOU. They are both pretty cheap--get about 8 feet of tubing, minimum (about $2/foot, and worth it--be sure to soak it in baking soda for a few days in hot water)and the mask is around $25. I hope this helps! Good luck, and let me know how you fare!

As an alternative, you can go to any hardware store and get a face mask that is normally used by people who paint cars. 3M makes a mask that filters organic vapors (those VOCs again!) and is disposable. They will last for a few months (depending on useage)and cost about $40 or less. They are lightweight and work just as well as the ones from Lab Safety Supply. It's a matter of personal preferance, but there are some choices out there.

. . .Washing the dishes?
I don't have a dishwasher, so I have to wash dishes by hand. There are many commercial soaps at the grocery store (I use Ivory, although there are some "natural" soaps offered, but I find they don't work well for me). Whatever you use, some white vinegar in the water will help dissolve grease. I OCCASIONALLY use Dawn detergent, as it is terrific for cutting grease, but the smell gets to me, so I must use vinyl gloves and a fan. I got a tip from a reader that Seventh Generation Automatic Dishwasher Powder or Gel (try calling needs.com) is good for you lucky guys who have dishwashers!

. . .Entertainment?
Seeing as how I can't go out to a theater anymore (you NEVER know what type of cleaning they have done and the bathrooms almost always have deoderizers in them), I found the most economical way for me to stay entertained is through the library (I can access my entire country library via my home computer and have the items sent to my local branch) and a DVD player. Believe it or not, you DON'T have to go to Blockbuster to get DVDs to rent! There is an internet company called Netflix (a href="http://www.netflix.com">netflix.com that will let you borrow a certain number of discs for a fixed monthly fee, which is deducted from whatever account you wish (preferably a checking or credit card). You get to have (as an example) 3 discs out at any one time. The faster you watch them and return them, the more you can see each month. This includes shipping time, so there may be times when you won't have any to watch. There are no late fees, no due dates, just hang on to whatever disc you wish to watch for as long as you want to. If you are smart and watch them as soon as they come in the mail and then pop it in the mailbox within one or two days (return postage paid, too!), you can watch a LOT of movies each month for the price of 4 DVDs from Blockbuster. They have around 12,000 titles, so there's always something to choose from, and new releases have lots of copies. My waiting list of films I want to watch has over a hundred titles! DVD players are about the price of a VCR now, and Radio Shack or Circuit City (or wherever you buy it) will help you set it up (hint: it's easier than a VCR!). Since it will play CDs also, you can sell your CD player on eBay or half.com (or any other auction site) to help finance the purchase of the DVD player. You never have to leave the house to get your movies, there's no pressure to return them, and the selection leaves Blockbuster in the dark. It's a great way to catch up on all those old classic films you always meant to see, like "Citizen Kane", AND hear Roger Ebert give an excellent and informative running commentary, if you choose to hear it! Check out the website for more details, and don't be scared of new technology if you haven't used a DVD player before. It's a cheap way to get a lot of entertainment, provided you don't have EMF sensitivities. Another good thing about this music/video machine is that it's easier to concentrate on a movie than reading a book--since most of us have such limited energy, it's nice to just sit back and be entertained sometimes! Many libraries are also building up DVD collections, but you have to show up to get it and return it, and there are late fees in most cases (on top of the rental fee). Netflix is, in my opinion, the best option, as they will get any DVD as soon as it's transferred to that medium. This includes old classics as well as the brand new releases, and you don't have to leave home (unless you have a PO Box)!

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