MCS Diaries

The Online Journal of a woman who suffers from Multiple Chemical Sensitivity (MCS)

Monday, May 28, 2007

A Beautiful Day

Today is Memorial Day, and I spent it with my daughter, son-in-law and granddaughter. A lovely day spent outside with not-too-many symptoms. That's always good.

Last night I spent about four hours speaking with an online friend who has MCS and lives in Hawaii. We compared notes on symptoms, onset of symptoms, friends and families reactions to our symptoms, and how we cope. Mostly we talked woman-to-woman as we females do.

I'm tired tonight. That's why I'm rambling. It was a good day. I even cleaned out the a/c unit in the bedroom. Took it apart, vacuumed, scrubbed, etc. so no mold or other nasties blow into the room. You know I forget what it's like to be in a quiet environment since I'm always since my world always seem to be enveloped by air purifiers, fans, air conditioning units. I'm not complaining though. In fact, I'm grateful. What in the world would we MCS-ers do with them?

Sunday, May 27, 2007

Memorial Day

Thank you to all of our soldiers, past and present. My Dad served proudly in WWII in the India, China, & Burma campaign. His story is an interesting one. He was braver than I ever could have imagined.

My allergies are out of control as well as some aspects of my MCS. It's just never easy. I have a friend/cousin coming to stay with me soon for nine days and haven't yet talked to her about what she can bring into my home and what she can't use/bring in. I'm dreading that conversation. Although Julie is so sweet and loving and understanding of my MCS, my needs seem to complicate everything. Nothing is simple anymore. I don't even know what bed to give her to sleep in. Ordinarily I would give her my bed, but what if it becomes contaminated from her smoking or products? I won't be able to sleep in my bed anymore. After the first three months' of my illness when I could not sleep in my bed, I have to be so careful now. The only other choice is a sofa bed in the living room which won't be good for her back problem. I'm not sure what to do. Will breach the subject with her during our next telephone conversation.

No wonder I'm so tired! I'm always concerned about the impact my needs will have on others. I need to stop that!

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Friday, May 25, 2007

Stronger Than Steel

Most of the people I know with MCS are very strong. We really have to be strong to maintain the fight and to manage the endless battles which confront us.

I have had a good few days. I'm never sure why that happens or how long it will last, but I remain grateful for every moment I can feel okay.

Sunday, May 13, 2007

They Shoot Horses, Don't They?

Throughout the day I looked forward to meeting my friend for dinner at Charlie Brown's and seeing the new movie "Georgia Rule". As soon as we were seated at our table, I knew I was in trouble. The nausea began and the breathing difficulties. Then the migraine started, and my body began to tremble just a little bit. I've been going through this for 14 months now. I know what this means. My heightened sense of smell (olfactory sensitivity) made me well aware that the man seated at the table behind me had used an aftershave or cologne which contained highly concentrated amounts of formaldehyde. My skin began to burn. My left eye twitched. I couldn't help but wonder what my friend would say if we had to leave the restaurant. She is sympathetic to me, but she doesn't really understand my condition. I try to ignore the poisons, but I should know by now that that doesn't help. It never does. I'm getting sicker. I ask for water, and after asking for the second time, the server finally brings over a small glass. I ask my friend to switch seats with me so I can get further away from him. She's fine with that although she says, "I don't smell anything." Lucky Lorraine. I wish I didn't smell it, react to, get sickened by it. Although I have moved to the far side of our table, each time the air conditioning cycles on, his chemicals poison my world. Finally, he leaves. He has finished his meal. He is gone. Within minutes some of my symptoms begin to subside. He never knew that the simple act of his slapping the aftershave lotion on his face, the simple act made me overwhelmingly ill. They never seem to know, they never seem to care. I want to shake them. I want them to feel the way that I have to feel. I don't deserve this, and no one does. Inside I am saddened. I had been feeling better in recent months. I had felt like I was recovering. Sadly, I should have known better.

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Welcome to the World of Multiple Chemical Sensitivity

Welcome to my MCS Diary.

First of all, what is MCS? MCS stands for Multiple Chemical Sensitivity. This is a condition where a person has been overexposed to one or more chemicals and now reacts and becomes ill from even small amounts of those chemicals or other chemicals in his or her environment. I became ill 14 months ago with MCS after I inherited a piece of furniture which contained a high degree of formaldehyde in it. Formaldehyde, as some of you may know, is the main chemical used in embalming fluid. It is also a component of thousands of other products such as plywood, pressed board, varnish, paint, sheetrock, clothing, shoes, flu shots, inks, personal care products (shampoo, conditioner, etc.), carpeting, fabrics, yarns, and many other products. Formaldehyde has been banned from many products in Europe , but the U.S. continues to use allow its use despite the known hazards of this substance. Basically formaldehyde is an inexpensive chemical that is used as a binder in adhesives and fabrics. The sicknesses it causes seems to be one of many of the chemical companies' dirty little secrets.

Oh, and beware of aspertame! Do your research before sipping that next Diet Coke. In the body aspertame breaks down into methane and formaldehyde. And it looks like we slowly poison ourselves each time we imbibe. Do yourself a favor and borrow a film called "Sweet Misery" from your local library. It details the impact aspertame has on the human body, why and when it was legalized in the U.S., and the collateral damage that it causes in human beings. Yes, in us. And in our children.By now you may be thinking, "Oh, she's one of those nuts. Those environmentalists who are against everything that modern society holds dear." I assure you that I am not. Or rather, I didn't start out that way. Now I am forced into exile in many ways because what's happened to me. And .... this could easily happen to you. Or to your family and loved ones.

During the two and a half weeks that the formaldehyde-laden desk was in my home, I became sicker and sicker. And after that I began to react to everyday chemicals in an astonishing and life-limiting way. When exposed to chemicals, I begin to wheeze, become nauseated, have blurred vision, burning mucous membranes and skin, weakness, fatigue and body pain. Within a week of the desk being in my home, my right eye developed a constant twitch, and the left side of my face was numb. Despite removing the desk (and other furnishings which contained formaldehyde) from my home, I now become ill when exposed to even low-levels of these poisons. At first I was scared and then I became angry, and then I found others who were like me and shared, in their own way, in my plight.

The fine print -- This is my story only, and perhaps in some way telling my story can help someone else. Others have shared their struggles and successes with me and that has helped me in more ways than I can even begin to say. It goes without saying that you should consult your own medical practitioners, and that this blog is not meant to provide medical advice or expertise in any way, shape, or form. Although I may write about different treatments that I am involved with, I have no credentials to offer these treatments to others. I also have no affiliations with any companies or sellers with regard to any products that I may mention that have or have not helped me. I mention them only with regard to myself and my situation. I have no medical expertise to determine whether these products are appropriate for you or your condition.

The purpose of this blog is to share my experiences on a very real and day-to-day basis. MCS is exhausting. It requires careful planning and leaves little room, if any, for spontaneity in the person's life. It is limiting. There are losses you cannot even imagine when this journey begins. I want to share my struggles in the hopes that others will relate and share their' experiences. Feel free to share stories of your own MCS journey. We are all in this together.

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