Coping With MCS

In case anyone is interested, an article was written about me and MCS. The name is an alias, so don't try to track me down (but I will answer to that name if called)! Here's the link:

Creative Loafing Cover Story

I thought the article was excellent, especially the sidebar that goes along with it.

The Best Science Money Can Buy

The journalist who wrote this captured the idea of MCS much better than I ever could, and I've been working on it for almost seven years now!

  Once the specifics of this syndrome are out of the way, some psychological and emotional tactics for coping with the illness will be described. Even at this early stage, A SENSE OF HUMOR is the most useful asset! Note the following email correspondence between a friend and me:

    

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I assure them that I have a sense of humor because I find it highly amusing that *they* are telling *me* I MUST have a sense of humor. They usually get a dull look washing over their faces.
Barb--

It doesn't take that much information to elicit a dull look over most people's faces who work in the health care industry! LOLOLOLOL
This is a gem! Can I quote you (first name only or initials, of course)?
C.

Chuckles right back to you with your line. Don't you love it? The frogs have an inner lid that comes up to give them that glazed look, but you can see by their eyes when people's brains take a hike!
You can go for broke and use the "barb wilkie," if you'd like. This one is pretty innocuous.
It's flattering to ask to be quoted. Many thanks! -- barb

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  A sensible brain to distinguish between what's garbage and what's useful is a big help, too. Some doctors are terrific about MCS, but be prepared to see several who don't believe in it and will tell you that you are suffering from some sort of psychiatric/psychological illness when you know you are not; it's their way of admitting to themselves (in an acceptable way) that they don't know how to help you. Hey, if you can't find fault in the arguement, abuse the plaintiff! Those who stick by their guns and believe in themselves will be able to deflect the barbs that WILL be thrown at you by doctors, family, friends, and the general public. The most common diagnosis that others I know with MCS get is "panic attacks." Do some research on panic attacks and try to figure out if you fall into this (very treatable) category, or if you are being given that diagnosis just so some doctor will get you out of his/her hair. As grating as it is, submit to the round of psychiatric tests that you will probably be asked to take; if you DON'T do it, you will be labeled as "uncooperative." My personal feelings are that we know our bodies pretty well, better than some psychiatrist who has never heard of MCS and will diagnose you only through a battery of multiple choice tests. On the other hand, neuropsychological testing can help you to find where your cognitive abilities are losing ground and the results MAY help you with getting/proving disability. Having had the thumb screws put to me, the only test that I vehemently object to and will NEVER consent to again (remember, this is my personal opinion, not medical advice!) is any form of the MMPI test; it is designed for people who have NO physical problems--someone with multiple sclerosis or temporal lobe epilepsy would show up as being schizophrenic if they took that test. You can use your imagination as to how folks with MCS, a syndrome about which so little is known, would be interpreted. Make up your own mind about this one, but I would refuse it for myself.

If your doctor gives you a hard time about MCS not being a "legitimate" illness, ask him/her to look at ICD codes #981, along with #987.x (there are numerous appropriate numbers here for our specific illnesses). This is an illness that is as valid as diabetes or leukemia, and it gets a number for billing just like those diseases. If you go to website http://66.17.18.109/flashcode/home.jsp, you can research this for yourself, and/or print out a copy for your health care provider. Be prepared to get a "look" from doctors that says you have no business knowing ICD codes. With all the HMOs and the limited time that doctors can spend with patients in a day because of the mountains of paperwork or directions from management, it's up to YOU to take charge of your own healthcare. Many people find this the hardest task of all, because they don't want to do the work of educating themselves. Only a cliche will work here--no pain, no gain. If possible, take a class in assertiveness training (if you are female, take one especially for women. Contact me if your MCS is so bad that you can only listen to tapes/CDs, and I'll try to find a place to get some good ones. I also give a lot of practical advice on this website that you can use. I can't stress this enough, as you are going to have to be your own advocate at some point--the only questions are the degree to which you'll need these skills and when you'll need them, and they are skills which can be learned, regardless of your age, IF you REALLY want to learn them. No one said MCS was going to be easy, folks. I just speak the truth as I see it and have experienced it.

Unless you go to a doctor who specializes in environmental medicine and MCS, you probably won't get a doctor to say you have MCS. They will get jeered by their peers for saying you have such a controversial illness (even though the Federal Government recognizes it!) and many doctors have to fight to keep their licenses if they start making that diagnosis. Remember, the medical world doesn't like change unless it involves technology that they can make a lot of money off of it (like a PET scan, or an MRI machine, etc.). They don't like to make a diagnosis where avoidance and no medications are the way to manage the problem--there's no money for them in that, and medicine has become a business, just like everything else. I have found some clever ways to get help from my doctor (who is pretty open-minded MOST of the time). While you may have MCS without a doubt, but one of your symptoms may be really bad migraines or asthma, do the best you can to be treated and given the "official medical diagnostic code" for one of these problems, even if you and your doctor both know that that's not the root problem. They all want a non-controversial diagnosis to pass on to the insurance companies. . . Show up every now and then so they can make some money and keep you on the "active" roster with a case history in case you decide to apply for Social Security. If your doctor doesn't understand why you can't tolerate the inhalers that he/she will invariably give you (assuming they make you sick), just say that that is the way it is, and the best way you have found to manage the situation is to avoid certain chemicals, then give him/her a list of what bothers you. The reply you'll probably get is to stay away from these things then, and to keep in touch if you have a problem OR to go see a psychiatris (depending on the doctor). Get a Medic Alert bracelet saying that you have asthma but can't tolerate inhalers. That will buy you some time until you can give more information. You have a LEGAL DISABILITY and a hospital MUST accommodate you because of the ADA, and if they don't, they risk losing all federal funding. I don't know of any hospital that can tolerate that kind of financial loss. If your doctor is being a jerk and won't believe you, FIRE him/her. It is your right--exercise it. Remember, they work for you, you aren't there to please them or to fit into their ideas of how things SHOULD work. This doesn't mean that you shouldn't compromise and try some things he/she suggests--just use common sense. I don't even want to get into what some doctors have told me, it is so degrading and untrue. I am not above getting up and walking out of a doctor's office if he is being a jerk or isn't listening; I also don't pay their bills and tell them why (hint: always pay by credit card when seeing a doctor you don't know or trust--you can get a lot of good consumer protections by using credit cards that you can't get by using checks or cash). Learn to be assertive if you aren't already! You aren't in the world to keep doctors happy.

I have found that when I am having a reaction, no matter what the symptoms are, I tell people that I have asthma, and I am having a typical reaction FOR ME. So far (knock on computer keyboard), NO ONE has challenged that explanation or thought I was a kook; paradoxically, people fall over themselves to help me or to bring me water. I don't like having to lie about the true problem, but I figure that it is better to lie a wee bit than to have to try to explain MCS to folks who are panicking or don't believe in MCS. Sometimes, the end justifies the means, even if it goes against everything I stand for.

I found a VERY interesting website that deals with ALL KINDS of aspects of MCS. I would urge you to take a look at it. The author has sample letters for doctors, sample forms, information about applying for SSDI that was written by lawyers (I thought it was TERRIFIC and INCREDIBLY USEFUL towards winning a case). The URL is www.mcsinfo.homestead.com. Please check this site out--it may mean the difference between winning and losing your appeal to win your SSDI case.

After many, many tries, I finally figured out a way to deal with emergencies and strangers. Whenever I feel bad or see someone about to open a bottle of perfume/hand lotion/hairspray, I tell them (in my most pitiful voice) that I have severe asthma or just got over pneumonia, and the product they are using will make me really, really sick. While it's not the actual truth, it's close enough, and I usually get the other person to put out a cigarette, hold off on the lotion, whatever. Asthma they understand--MCS just brings on a blank stare or scorn. If it looks like the asthma approach won't work, I have used the, "I just got out of the hospital two days ago because I had pneumonia--would you mind not smoking until I leave?" line. It usually works and it only inconveniences the other person for a few minutes (God forbid they should be inconvenienced at all, but if it buys you some time, keep your eyes on the big prize, which is to have some clean air for a few minutes). Believe it or not, between these two approaches, I have had tremendous luck in avoiding some dangerous situations when I am around strangers who don't understand MCS.

Don't give yourself a timetable to get better. As much as you may not want to hear this, MCS is a syndrome that you have to take one day at a time. If you feel better doing something, do it. If something makes you feel worse, stay away from it. You will learn quickly that everyone is an "expert" on how to "cure" you; you will hear about faith healing, meditiation, twirling at the moon three times while chanting, homeopathy, acupuncture, magic herbs--if you can think of it, you will hear it. I believe that some of these treatments really do help SOME people, but on the whole, most folks who get sick tend to stay sick. Some lucky ones get better and can go back to a "normal" life (whatever that is). Almost everyone I have talked to who has MCS says that even if they did get better, they prefer their current non-toxic lifestyles. I am one of them--I had no idea how much I was polluting my brain, my body and my home with so many toxic chemicals. Take comfort in that, if you can.

MCS can be a great teacher, if you will let it. If you can be open-minded and are willing to change your "road map" of how you think life should be, you just might have a pleasant surprise. Life is about good friends and families and being alive to see one more sunrise, not how much money you make or how fancy your car is. There is a good feeling in knowing that you can exist on this planet without so many synthetic chemicals polluting your brain and the earth. Dwelling on the "down side" of this illness is useless for the sufferer and annoying to the people around her/him. Find the humor in this illness, find a little piece of joy each day and dwell on that instead! It doesn't mean you don't research and learn, just try to have other interests that make you fascinating as a person in addition to the MCS. I am not advocating that all your friends go into denial along with you, I am merely suggesting that there is more to life that talking about yourself and your illness. No one said that MCS would be fun or easy, but try really hard not to take an emotional nose-dive, dragging everyone you love with you.

I found some masks that are quite useful. One is from the American Environmental Health Foundation (1-800-428-2343) and is made from coconut charcoal, with a cover in both cotton and silk. I like the one with the string ties rather than the elastic ear pieces. The price is reasonable, about $30, and the filters are replaceable. I find that I have a hard time breathing through this mask after five or ten minutes and it makes my glasses steam up. There are also respirators that look like it's from WW II, but they are easier to breathe through and the filters are also replaceable. You can order them through Lab Safety Supply (1-800-356-0783), get a catalog, and talk to a tech representative. You'll need a filter that takes out organic vapors and you may or may not need a HEPA filter with it ('tis a personal choice). I got a Moldex brand half mask (size Small) with lots of cartridges to replace the long-lasting ones that are already on there. I needed to soak it in baking soda and hot water for a few days before it outgassed enough for me to use it, but it's fine now. I can only pass on what has worked for me--you may need a different brand. It's not that expensive, either, considering how long the cartridges last and what it allows me to do. If I spent $50 on the mask and a box of 10 spare cartridges, that's an extravagant guess. You can also pick up some 3M respirators at your local hardware store, but few people with MCS can actually make it INTO the store to pick one out! There are some low-cost options that will let you get out and about for at least a few hours if you don't mind looking different from everyone else. I'm usually so happy to be out of my apartment, I don't care!

While this book doesn't deal with MCS specifically, I found it to be extremely useful. Linda Hanner's, When You're Sick and Don't Know Why: Coping With Your Undiagnosed Illness is a terrific morale booster. Check your local library or Amazon.com for a copy.

Again, this is not an MCS book per se, but many people with MCS also have migraines (and many people with migraines show symptoms of MCS). There is a wonderful book that looks at migraines from a sufferer's point of view, not a doctor's. Look for Managing Your Migraine by Susan Burks, MEd. It's available in paperback at bookstores, through Amazon.com, as well as through your library. I have yet to find a book that explains medications, theories, lifestyle changes, hormones, and other factors in plain English as well as this one. I highly recommend this book to everyone I meet who has migraines or MCS. This is a book that you will want to buy, not check out of a library, as the information is very comprehensive and can be used over and over again. It's more of a readable reference book than a novel or a morale booster. Buy it, it's worth it. My copy is full of highlighted passages!

For general info about cleaning and dealing with MCS in practical terms, read Nontoxic, Natural and Earthwise : How to Protect Yourself and Your Family from Harmful Products and Live in Harmony With the Earth by Debra Lynn Dadd. This one is a classic and is full of great tips for living in a cleaner environment. Again, this is a book worth buying and keeping. Check with Amazon.com for other books by her!

Another excellent book that I came across is called Living Well With A Hidden Disability by Stacy Taylor, M.S.W., L.C.S.W. with Robert Epstein, Ph.D. Again, Amazon.com has this in stock in paperback, but be warned that it has a slight smell. Let it air out before you read it. I thought it was a great way to get started reclaiming my life.

Depression and anger towards callous physicians is normal. Most people go through a looooong roster of physicians until they find one who understands and is willing to help. Be patient, believe in yourself, but be realistic. Aside from a medication that has shown to be of limited benefit (Neurontin), the main way to deal with MCS is to avoid the stuff that makes you sick. There isn't much money for the medical profession if you stay away from drugs, tests and office visits. The lobbyists for the chemcial and pharmacutical industries are also extremely powerful, and to admit that many chemicals in common use are harmful isn't good for business. These folks make the cigarette companies look like angels. Follow the dollars. . .

You can find the above-mentioned books on Amazon.com or through the large bookstores, like Barnes & Noble (although I prefer to special order books through my neighborhood bookseller). Click here for an easy link to them (and save yourself a trip to a smelly bookstore in a mall somewhere!). I have found this to be the best way to buy books since I can no longer go into bookstores--I just love that home delivery by the post office!

In Association with Amazon.com

 
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