What makes you feel safe?
How important is it for you to feel secure?
What lengths will you go to make sure you and your family stay out of harm’s way?
For one reason or another, all of us harbor some form of fear and insecurity. And, for the most part, our environment plays a huge part of who we are and what we are affected by, both emotionally and physically.
Like the picture above, our lives may sail along with perfect skies above. Then there are the other times when we want to hit the restart button. Darkness looms and all we can see are the lights that shine brightly amongst the shadowy night sky.
Last week, hubby and I took off for San Diego. The community we live in decided it was time to slurry all the pavement in our 41 acre complex. For some, this would just boil down to a minor inconvenience. But for us, this situation turned into a major problem.
At first, we didn’t know what to do. We debated back and forth the pros and cons of the situation. Should we stay and bunker down the hatch? Or should we flee to safer waters? In either the case, we knew that the decision we made, would affect our safety.
Why? Because our family has a physical condition that would make it difficult for us to stay or to travel. In fact, this is the reason why we haven’t traveled anywhere for several years. We have what researchers call MCSD, or Multiple Chemical Sensitivity Disorder.
What is MCSD?
MCSD, or EI (Environmental Illness), is a result from having adverse reactions to things in your environment, such as certain chemicals, foods, perfumes, cleaners, solvents, air pollution, cigarette smoke, pesticides, mold pollen, dust, dander, (or slurry) and the list goes on.
Basically, it can be likened to an allergic reaction with harsh reactions that can affect multiple organ systems, such as respiratory, nervous, cardiovascular, digestive, skin, etc. and therefore can cause numerous symptoms that include asthma, headaches, joint pain, rashes, irritable bowel, mood swings, brain fog and many more.
Are we having fun yet?
Anyway, triggers and symptoms can vary depending on the individual. As an example, someone may eat dairy and later on develop a headache. Or, as in the case with our family, we are affected by perfumes/fragrance, pesticides and petroleum products and our allergic reaction varies from high blood pressure, seizures, heart palpitations, alopecia, depression, nausea, or flu-like symptoms.
And over a period of time, like most allergies, these triggers can grow ever the more sensitive, so that they become very debilitating for those of us that suffer from this condition.
If you suffer from any of the aforementioned, don’t be misled or discouraged. There are two camps on this issue: those who believe that these symptoms are psychosomatic and those who feel that this is real and caused by over-exposure to chemicals in our environment.
I for one am with the second camp because I am living it, along with countless veterans of the 1991 Gulf War and First Responders and others exposed to the World Trade Center toxins. And we are not alone. There are literally thousands around the world who suffer from MCSD.
In our head? I think not.
So what did hubby and I do to keep out of harm’s way?
I had to call ahead and request that the hotel remove all fragrance from the room, including soaps, shampoos and linens and to clean with nothing but hot water and vinegar. Yep, Grandma’s old cleaning recipe really works as a great cleaner and disinfectant. And the Hotel was all over it. They assured us that this was not a problem and would have our room ready upon our arrival.
But…they had forgotten one request. They had forgotten one step that would make or break our stay. What was it? Ozone. They forgot to ozone our room. For those of you that don’t know, ozone is a safe way to neutralize chemicals, odors, molds, etc. from any surface or space. And they forgot. I wanted to cry, but never fear, the manager was near. He gave his word that while we dined, at their expense by the way, they would ozone our room. (Mmm, I can still taste that filet mignon.)
What’s the moral of this story?
It wasn’t perfect. And how could we expect it to be? Our world is far from perfect. But we survived. Perhaps a little sick, but it could’ve been worse. I spent the entire trip sleeping on the floor of the bathroom on a make-shift bed that hubby put together made of several pillows, topped with a comforter and pillow. It was a little like camping out in an RV. An expensive RV, but we survived. And we made it home safe and sound.
So what do you think? Have you ever heard of MCSD? Do you or do you know someone who suffers from any of the symptoms listed above? For the longest time, hubby and I did not make the connection until our doctor diagnosed it. It was truly an “Aha” moment. Perhaps you may suffer from another malady. What are some of the things that you find helps your family keep out of harm’s way and stay safe and sound? Please feel free to share any thoughts or suggestions!
For more information on MCSD, please visit http://www.chemicalsensitivityfoundation.org/index.html.
Thanks everyone for stopping by and for all your encouraging comments!
Wow, who knew there was such a condition? You poor thing. Thank you for educating us about it! I’m sure it was a relief to have an official diagnosis so you could begin to better understand and manage it.
I started having heart palpitations when I was 13, and until I was in my thirties, was told it was all in my head. It was maddening and terrifying. When I was diagnosed with Mitral Valve Prolapse and learned about the disorder, I was so relieved to learn it is a benign condition. It still freaks me out a little when I have an episode, but at least I know now that I won’t die from it. It’s always the fear of the unknown.
Take care, sweetie!
Suzanne Vince recently posted..From the Ashes of Pain Comes Great Writing
Hi Suzanne! It’s so great to see you! How are YOU doing? Ack, heart palpitations? At 13? Ooh girl, that’s not good. So not in your head. I hate when doctors do that Suzanne. I bet you get freaked out with an episode. Who wouldn’t? Yes, the fear of the unknown can be frightening. I think that’s why I was glad to know there was a name for what was happening to me. That there was a cause to my physical reactions. It’s not fun by any means, let me tell you. But I try to cope the best I can, as I know that’s what you do. And you’ve been through quite a bit yourself lately. I hope that your feeling better Suzanne. Thank you so much for your kind words and support! 🙂
Wow, Karen. This is unbelievable. How do you manage to keep up your bright spirits? I’ve heard of such things, but I thought it was something that more commonly affected younger people (I’ve heard of kids developing lots of those kinds of sensitivities, which made sense to me, because the world is more polluted than it used to be). If MCSD is not an argument for us to globally clean up our act, I don’t know what is…
Alarna Rose Gray recently posted..Road Map
Amen Alarna! Global clean up is so needed! I try not to dwell on stuff, unless I’ve been exposed. Then yes, it does get kinda depressing sometimes. More frustrating really. We’ve all been exposed to so much over the past several decades Alarna. This is happening world-wide. People are getting sick from this all over. It has affected some so much that they’ve lost jobs because of this. I myself cannot work among an environment full of perfume. Now where do I go where there isn’t perfume? Thus, I’m writing from home. Yay! Stay healthy Alarna and enjoy your spring and your writing! 🙂
Oh, Karen, I’m so sorry you had to go through this. I’d never heard what it was called, but I did know a woman who had to have her bed and furniture specially made or she would get very sick from the chemicals in the materials. And I have some inkling of how horrible it must be because I black out easily when I’m in rooms with things like cigarette smoke or incense. I’m sending you a big hug. You are such an amazing person. 🙂
Hi Alicia! Oh wow, you black out? Whoa. We are all subjected to so much anymore, it’s no wonder we are seeing all these different symptoms Alicia. That’s crazy. Boy, do I ever identify with that woman with the special furniture. Hubby and I got some new furniture and it had to sit in our garage for about five months before we could bring it into our Condo. But I hear ya on the cigarette smoke girl. It makes me sick too along with the perfumes. Take good care of yourself Alicia. Thank you so much for your encouragement and support. Say hi to Roy! 🙂
Wow, Karen, it’s so tough to have to be constantly on guard when our world is so filled with all kinds of this crap. I know people who have problems with fragrances, etc, but other than trying to avoid it so that I don’t personally make them sick when they’re around me, I’ve never thought too much about the extent they have to monitor their environment. Thank goodness there are places and people (like the hotel and staff) that take such good care of you when you’re away from home. Thanks for sharing your story!
Sheila Seabrook recently posted..We Interrupt This Program For An Important Announcement…
Hi Sheila! Thank you for understanding. Yes, our world is full of all kinds of crap. How loving and kind of you to avoid or limit your use of fragrance in order to prevent your dear friends from becoming sick. And the fact that you get it. Well, I am in awe! You’d be surprised just how many people don’t get it. Yet, for most people, unless you suffer from allergies or another form of chronic illness, it is hard to understand. Thank you so much for sharing your thoughts on this Sheila. You given me a lot of encouragement. Take care! I’m sending you a fragrance free hug! 🙂
Holy Moly — I had no idea! What an overwhelming challenge to live with, day in and day out. Your strength astounds me. I’m suffer from allergies but I swear to goodness, I will never complain about my itchy nose again. It’s amazing what you become knowledgable about when you have no other choice. I’m so glad you blogged about this so awareness of this condition will spread, as well as empathy and patience towards those who suffer from it. Hang in there, sweetie!!
Ginger Calem recently posted..WritersButt Wednesday – It’s All in the Bones
Hi Ginger! I hope I didn’t overwhelm anyone. That wasn’t my intention. Allergies are real no matter what they are and who suffers from them. And yes, you are right, I have had no choice but to educate myself on this subject. It does help that my doctor has this and is able to help. But, we live in a world that is permeated with fragrance. People bathe in it. Unfortunately, it really isn’t healthy for anyone with all the neurotoxins that are used in their production. And that’s why more and more people every day are being affected by this. As I said to someone else, it can be likened to someone who has developed gluten sensitivity. You wouldn’t dare eat gluten or risk a run to the hospital. And for people who suffer with MCSD, the same could be said. Thus, we are paranoid when it comes to anything new to our environment. We have to limit very closely our expose to anything chemical. So I’m hanging Ginger! Thanks for all our empathy and support! 🙂
Doctors are such idiots sometimes! I wish they would respect what patients say. Some are getting better, but sheesh!
Hugs! Karen, I am so sorry you have to struggle with this. My husband is allergic to nearly everything under the sun, allergies that are getting worse as he gets older, so I can understand a little of how difficult this is for you.
I am so glad the internet allows us (me) to connect with you, too! Great post.
I hope that people who read this learn to tone down the scents that they wear on their persons (perfumes are the worst, but aftershave, hairspray, etc can make life miserable for those with allergies or MCSD.)
Amen sista! I totally agree with you Lynette. I am so sorry to hear that your hubby suffers from allergies/MCSD. I understand getting worse. As you know, as with any allergy, it is over-exposure to whatever it is that is affecting you and your body goes into over-drive trying to combat or negate the toxin. Fragrances or perfumes are the worst Lynette. We no longer have a natural base for our scents. All our fragrances are derived from a chemical copy of the real thing. Neurotoxins, petroleum and tobacco are what’s used to manufacture these scents and that’s why we’re all being affected by them. You could liken it to what GMO foods have done to people who can no longer eat gluten. So yes, please people, stop wear so much fragrance. It’s in the hair and in the air, soaps, clothes, it’s everywhere. Thank you for your encouragement and empathy Lynette. I too love that I can connect through the internet. My hope is that I can help people come to understand this malady. 🙂
Oh wow, I know people who have sensitivity to all kinds of things in the air like this (my mom, for one), but never knew there was a name for it. UGH that you had to leave your home because of it – and so glad your trip was mostly pleasant and that the hotel was accommodating!
Jennette Marie Powell recently posted..My Town Monday: A Useful Tool from Dayton
Hi Jennette! Ooh, I’m sorry to hear that your Mom suffers from MCSD. There are just so many who do that don’t know what their symptoms are from and what is causing their illness. Yes, there is a name for it and there are countless others who suffer from this from all over the world. Jennette, please know that I have much sympathy for your Mom. It is very difficult to live with this. As I mentioned, our whole family suffers from MCSD. We do not wear fragrance, wash or dry with fragrance, clean with fragrance or spray the air with fragrance. We are very careful when dining out or shopping. We don’t go to the movies or theater anymore. If your Mom needs to talk to someone about this, she is more than welcome to email me or call and I would be more than happy to share with her what I’ve learned along with links, doctors, and organizations that support the sufferers of MCSD. Please give her a hug from me. If there’s anything we can take away from this, it is to be aware that what we do or wear may affect others and their health. Thank you so much for your support Jennette! Take care! 🙂
Glad you made it home safely. This sounds awful. I have little experience with chemical sensitivities, but know that dealing with them can be horrendous. Thank you for putting information out there so more people can understand, and help!
Whew, yes Julia, it’s great to be back home. And yes, it can be a horrendous undertaking when venturing out of our immediate environment. Those that have chemical sensitivities are forced to endure a never-ending risk of exposure to these chemicals while at the same trying to live their daily lives amongst the workforce, grocery shopping, errands. It can be exhausting. And for most, this has meant that some have lost their jobs because they are too sick to risk even more exposure. It is a nightmare really. I’ll be happy if my experience will help others who may be suffering from this same illness. Thank you Julia for your support! Great to see you. Take care! 🙂
Hi Karen, I knew nothing of this really. Wow, what an eye opener. Stay sharp girl, you can beat this if anyone can. The idea is to, as you say, plan ahead. Perhaps the rest of us should start taking preventative measures.
Prudence MacLeod recently posted..Fun in the Autumn Sun
Hi Pru! I am so glad that my post was informative. It was meant to be. This is becoming a huge problem for so many around the world. And preventative measures should be taken. Our bodies can only take so much. They can only absorb so much. And our environment is filled to the brim with toxic chemicals, They’re in our foods, laundry, cleaners, air fresheners, which are the worst. To be warned is to be forearmed as they say. Take care Prudence and thank you for all your encouragement! 🙂
I’d never heard of MCSD before. I wish I could give you a big hug for how brave you were to figure out a way around the situation.
While I don’t have MCSD, I understand how people without a condition don’t fully understand how important the details are (like spraying the room with ozone). I have a mushroom allergy. I can’t even prepare anything with mushrooms in it for someone else because skin to mushroom contact makes my skin burn.
Anyway, on our vacation, my husband and I decided to go out for a special dinner and, since it was a special treat, I decided to splurge and get a fried item from the menu (I normally go for the healthier baked and/or grilled options). I always ask if a dish has mushrooms in it and explain I have an allergy before ordering, and this one didn’t have any. What the restaurant did have, though, was three fried mushroom dishes on the menu. Because they cook everything in the same oil, I essential ate a plate full of mushrooms.
I woke up in the night so dizzy that I couldn’t stand up without passing out, covered in hives, and with trouble catching my breath. My husband ended up having to stay up with me just in case he needed to call for an ambulance. (Thankfully he didn’t but it was really frightening as we tried to decide what to do.) It was a week before I was back to full strength and the hives cleared up (thank goodness I was on vacation anyway!)
I think when it comes to keeping ourselves or our family safe, we have to be the proactive ones before no one else will look after us the way we’ll look after us. I’ll definitely be asking about fried mushroom dishes in the future when I eat out!
Well Marcy, I’ll take that hug! And it sounds like, from your comment, that you could use one too. Food allergies are very serious. And, according to the CDC, a form of MCSD. Not that you would want that label placed on you. But, you can understand how paranoid you almost need to be in order to stay healthy so that you don’t have an allergic reaction. It can be really scary sometimes when it happens. I totally understand. And when it does happen, even though you may have taken Benadryl or some other from of allergy medicine, that doesn’t guarantee that it will totally work. The riding it out method is exhausting and nerve racking. The not knowing if this will pass soon, or will you need medical attention. It’s just that perfumes are everywhere. They’re in the air, our clothes. They’re not natural anymore Marcy. They copy the scent and recreate it with a chemical. Most, if not all perfumes today are made of chemicals that affect your central nervous system because they are a derivative of petroleum. Not good. Please stay safe and take care of yourself girlfriend. And thank you so much for sharing your experience and for all your support! 🙂
Wow, that sounds like no fun at all. I don’t seem to have any problems with any of the chemicals that are normally found in my environment, but I know they can be more of an issue for some people and I can sympathize. Hopefully things are much better now that you’re at home.
Mike Schulenberg recently posted..How to Write an Academic Paper (with Zombies!)
Hi Mike! No, this isn’t any fun. But it is oh so real I can assure you. I’m so glad you aren’t affected by environmental chemicals. Although, you should know that experts do agree that it does affect each and every one of us at some time in our life. We can only absorb so much before we experience some form of adverse affects from all of the exposure over time. So I wrote this as kind of a warning and to make people aware and cautious to preserve your good health. We are not invincible, as much as we would like to be. Take care and thank you for your sympathy and kindness! 🙂
Oh, Karen, you poor hunny.
I can relate a little to this, from my own childhood. I was deathly allergic to every pollen, grass, mold, dust, and dander out there. Asthma, hives, ear infections, anaphylactic shock…you name the reaction, and I had it. As a kid, I spent every Halloween in the hospital (autumn is rife with ragweed, and mold from fallen leaves). I couldn’t go on school field trips to the zoo or park; no sleepovers in friends’ houses who had dogs or cats; and for sleepovers I COULD go to, I couldn’t eat the usual pizza and chocolate ice cream, because of my allergies to chocolate, milk, and tomato…what kid wants to stand out by having her friend’s mom make a sandwich, while the other girls are having pizza?
And my poor mother…she would have to strip down my room every other day and wash/mop/dust the floor, blinds, bed, bureau – my toys and everything else were in a room separate from where I slept. My bedroom had only a bed, a small floor mat, a bureau, and a closet.
But I have to say, my mom was a rockstar: she kept me as healthy as she could through prevention; she kept me ALIVE; she kept me from having to take those awful steroids, which were the only intervention in the ’60s and 70’s for kids with severe asthma and allergies.
She also had me go through immunotherapy treatment (allergy shots) for two years. Finally, FINALLY, the shots started to work, and the severe symptoms abated, and we weren’t rushing to the hospital every few weeks.
I was so glad to be done with childhood, let me tell you. But, at least it has given me a little understanding as an adult, to not take good health for granted. I really feel for you, hon. You are so strong. I’m amazed by how well you handle this. Go you! 😀
K.B. Owen recently posted..How Sam Spade came to be hard-boiled, part 1
Oh Kathy, you really have had a time of it my dear friend. And I thought I had allergies when I was a kid. Not to that extreme. Thank God for your mother! She went above and beyond the call of duty. I am glad you didn’t have the steroids because they can really mess you up. Here’s the thing Kathy. It’s one thing as an adult to deal with issues like these. But when you’re a child, you don’t fully comprehend why this stuff happens to you. And it cuts really deep to not be able to participate with your friends in what would be thought of as “normal” activities. I bet you’re thankful for the immunotherapy! It saved your life girl. I only wish that something was available for us like that. Our doctor, who himself has this by the way, is an allergy specialist. He treats people from all over the world. What makes our case difficult is that we are missing a gene that helps to detoxify our body, which doesn’t help our situation. Thus we have to live like hermits practically and avoid these harmful chemicals. The scary thing is, it affects everyone, it’s just that they don’t know it. Thank you so much for sharing your story Kathy. You are an amazing person and I am so happy we met! 🙂
Oh my goodness. That does not sound fun at all. I always feel so blessed when I hear stories like yours because I don’t have to live in fear of my environment.
Hang in there girl. I hope you got to enjoy yourself a little bit. San Diego is a beautiful place to get away from it all.
w/a Jansen Schmidt
Patricia recently posted..” . . . There Is More To Be Done, Than Can Ever Be Done . . .”
HI Patricia! No, it isn’t any fun, believe me. I used to be like you. I never feared getting sick from my environment. Until…I was over-exposed to something and developed an allergy. That’s all it takes. But thank you Patricia for the support girl. Yes, it was beautiful in San Diego while we were there. In fact, those were the pictures I took from the view at our Hotel. Gorgeous. Take care girl! 🙂
You’re an inspiration, Karen. I absolutely love your positive attitude and willingness to share your personal challenges so to help others. You rock!
I’m grateful that you and your sweet hubby have each other – and hope you don’t have to face similar challenges soon. <3
August McLaughlin recently posted..Problems with Steve Harvey’s 90 Day (Sex) Rule
Hi August! I think you take the cake as far as inspiration goes. But thank you girl for your encouraging words. As you know, I try to remain positive. It’s not always easy, but I try. This situation is a challenge. And unfortunately, we get “hit” every time we go to the store. We don’t even attempt a movie anymore. And come December, they’re painting our building. So off we go to stay with our son in Phoenix for three weeks. At least it’s the best time of the year to visit over there. And we’ll get to connect with old friends and other family members. It’s all good. 🙂
Oh, how awful, Karen. It’s one thing to have a sickness, but knowing that every new environment is a trigger for more? Wow. You might already have seen this blog, but Kathryn Treat wrote a book, called Allergic to Life. I don’t know if it’s exactly the same diagnosis, but it sounds similar.
Coleen Patrick recently posted..Capturing the Wish: When Visions of Happy Things Swirled in our Heads
Uh, yeah Coleen, “Wow” is an appropriate expression for this. It makes you paranoid because you cannot go anywhere and not be affected by something or someone, as in the case of perfumes! If anything can be taken away from this, it is my hope that people are aware of how much what we do can affect others, even when we are not conscious of it. I can’t thank you enough for recommending Kathryn’s book. “Allergic to Life”. It sounds about right. I’m sure that it is similar Coleen. There are just so many variables to this disability. Again, thank you! 🙂
Grrr. I see red every time I hear about doctors telling people it’s all in their heads. At least 70% of the time, in my experience as a psychologist, the malady turns out NOT to be psychogenic at all!
Glad you were able to get away from the toxins and do fairly well (and get free filet mignon to boot).
Kassandra Lamb recently posted..How Sam Spade Came to Be Hard-Boiled, Part 1
Hi Kassandra! I found you in spam again. There is a problem with my theme. Laird and I are working on it. Anyway, thank you for your very assuring, kind words. Yes, the color red has appear before my eyes also. But if they accept this disorder, then the government would have to label it as a disability. And no one wants to take responsibility for this either. Yet, hello, look at all the chemicals we are surrounded with on a daily basis. Our bodies can only deal with so much. Thus the allergic reaction. It is a challenge my dear friend. Yep, actually, that filet was really good. 🙂
Hi Karen, I had a friend who suffered from a form of MCSD, he couldn’t stand to be around electronics of any kind. It was really tough, he had to go out and camp in the woods just to feel human. But he did manage to get better. I’m so sorry that you have to deal with this. Best wishes to you my dear.
Hi Rachel! Oh, I bet your friend was sensitive to EMFs. So is my hubby and Mom. Hubby’s whole body vibrates and my Mom hears E flat ringing in her ears. It’s crazy. I bet he had to go into the woods. There isn’t any telephone poles and high tension wires. And I bet he had a hard time with the cellphone. That’s miserable. Good to know that he got better. In order for us to gain ground with this, we have to be completely away from the cause of our reaction. Which is difficult Rachel because we have to live. We still need to go out and buy groceries, etc. But it’s limited. Thank you so much! 🙂
Oh, Karen, MCSD sounds awful. truly awful. You were right to get out of town to avoid the slurry, but I see it’s tough to find accommodations without carpeting, drapes, and bedspreads. (I’m guessing you spent the night in the bathroom because it’s tiled.)
You did what you had to do.
I don’t for a minute believe symptoms of MCSD are in your head. Sheesh.
Pat O’Dea Rosen recently posted..Lessons from My Mom’s Heart Trouble
Hi Pat! Uh yeah, it’s a challenge. I have had this for most of my life. But it wasn’t until about ten years ago that the doctors put two and two together. In fact, our own doctor has this. And it’s in our whole family. That’s why I wrote down all those different symptoms. So movies, restaurants, stores are a no-no. That’s why I love the internet so I can connect with people like you Pat. Well, and the beach. 🙂