Hello, fellow sufferers of Environmental Illness or Multiple Chemical Sensitivity !
I HAVE AN EXTREME VERSION OF EI.
I wanted to share my story. When I was 18, I was a heavy crystal meth user for a year. A year later, when I began detoxing, I noticed the symptoms that would be classified as EI. It first started off with an immediate allergic reactions to ANY soap, detergent, shampoos, etc. Anything that was applied to my skin led to my heart racing fast, difficulty breathing, nausea, a " cloudy " feeling, an intense irritability. etc. I seeked over 12 doctors to figure out what this condition was. Lazy HMO doctors would dismiss it as psychological and refer me to a therapist. The therapist realized that my severe depression stemmed from this condition that cannot be classified by traditional medical terms. ( I could have told myself that. The therapy sessions were a waste of time for me because it did not address the physiological condition that was causing my depression. )
I was a mess. FINALLY, a Kaiser Permanente doctor told me straight up what my deal is. He said that through this HMO system, they cannot do anything with me anymore after numerous allery skin tests ( in which the tests indicated that I am NOT allergic to anything ! ), therapy, numerous blood/urine/stool tests, various antihistamines and anti-allergy pills like Claritin ( both gave me severe reactions), Chinese medicine ( more allergies ), etc. He told me I was on my own to do my own experiment to see what worked for me.
Well, folks, I felt like the Boy in the Bubble except I would probably be allergic to the bubble, as well ! It took 15 years of severe depression, missed opportunities, self-doubt, missed work, misunderstandings by loved ones and colleagues,....but I have finally found a regiment that allows me to live day to day. Now, my regiment may not work for everyone and it may appear unsanitary ( at times ), but I have tried everything and this is what works for ME. I hope it helps somebody out there.
FACE AND BODY : I use Cetaphil Gentle Skin Cleanser ONLY ( I spent countless hours and money in the maze of the Los Angeles natural market and homeopathic scene but nothing including KISS MY FACE olive oil soap worked for me. )
SHAMPOO : I used to use Cetaphil on my head but I got an allergic reaction. I only use it on my face and body. I used every homeopathic shampoo from Whole Foods and home cures ( olive oil : baking soda ) but they gave me a bloated, dizzy feeling. I only wash my hair with extreme cold water, now. I also shaved my head so I don't have to deal with any oily build-up. I know this is EXRTREMELY GROSS but it is the only thing that has worked for me....I've tried everything. I know this would be hard for the ladies to do....unless you're an avant-garde performance artist....
TEETH : Every homeopathic toothpaste and home cure alternatives like baking soda has given me severe reactions. NOTICE I AM AN EXTREME CASE. I now brush my teeth with just water using Colgate's Extra Soft toothbrush for ages 2 !!!!Dora the Explorer one, no less ! It's REALLY embarrasing..... but it works. I tried using vinegar, witch hazel, Listerine, tea tree oil as mouthwash.....severe allergies. So I make sure I brush 2 minutes/ 3 times a day. I get deep cleaning done with my dentists to compensate. Now, I plan any deep cleanings later in the day, because I know that afterwards I would have severe reactions to the numbing tools and the mandatory Listerine rinse at the dentist. Afterwards, I drive home fast, take a Tylenol, and stay in bed. I'm usually fine the next day.
LAUNDRY: I tried EVERY laundry detergents that claim to be hypoallergenic.....severe allergies ! Since I live in an apartment, I use the communal washer. I only use vinegar for my washes. ( Say goodbye to whites....wear alot of dark colors....your sunny disposition can offset your all black ensemble....) Before I dry my clothes, I check neurotically for any fabric softener from previous users.....then I dry my clothes normally. You can dry them using a clothesline but I don't live in the Irish countryside.
DRYCLEANING : I only buy clothes that don't require drycleaning. I explain my conditions to friends so I don't look underdressed at formal occasions like weddings and funerals.....well, I live in L.A., and we dress very casual. I have heard of people buying their own complete drycleaning kit to control the amount of chemicals used for their suits....I'm not there yet.
VITAMINS : I'm allergic to ALL vitamins. They make me bloated. So I drink LOTS of V8 and juices to make up for it.
COLOGNE : Forget about it. Maybe you can disguise an orange peel in your front pocket so you can smell ZESTY...
CONTACT LENSES : I use Clear Conscience Multi Purpose Solution. I have soft Optima Torics for astigmatism ( what a winner am I ! ) I rinse with water first. Then, I rinse with the solution. Insert. Then I use Blairex Preservative Free Sterile Saline Solution as eye drops. At night, rinse thoroughly with the MP Solution.
TRAVEL : Despite all these problems, I have travelled to 32 countries from Croatia to India. I bring my own pillow cases and small towels ( washed in my own way ). I do laundry in foreign countries with my same vinegar method.
Now, I have food allergies to ginseng, dairy, green tea, and honey, as well. I risk the dairy part because I can't give up cheese.
When I get an allergic reaction, only Tylenol Extra Strength can decrease the bloating.
But this regiment has been working for me. I know it may not seem sanitary at times. What's the other option ? Resort to self-pity ? Wallow in bed like I did all these years to find my regiment ? NO WAY. Also, even when you are down or having a reaction, get OUT of the house for a brisk walk so you don't feel mentally trapped and claustrophobic. Exercise your stress away.....nothing extreme if you are feeling a reaction. Also, this experience made me realize who my real friends are. Real friends are patient.
GOOD LUCK TO ALL OF YOU AND BEST OF LUCK AND I HOPE YOU FIND WHAT WORKS FOR YOU.....DON'T GIVE UP !.....IT TOOK ME 15 YEARS !!
Peace,
Yong
Subscribe to this comment's feed
Show/hide comments
written by PAMI, March 01, 2010
Blessings,
PAMI
www.pami.us
-
- +0
-
-
written by Tresia, March 01, 2010
As long as I stay away from people who use Gain, Febreze and Bounce products inside and outside, I can recover. After having four serious reactions at work due to incompliance, I have realized that my human rights were violated. I thought I was being an advocate, but not pulling what I need into words might have helped to advocate for my rights. I was given a difficult time, and I feared to agravate the situtation in writing what I need, looking back . . . Working for people with special needs I thought we were all in the same boat with a common interest. Apparently we are still very much misunderstood and are not supported the way we should be. The lack of education plays a big factor, and the will to learn. Now unable to work, I need to focus on what I can do with the rest of my life.
I use epson salt soaked in olive oil in the shower for my skin, to keep it from drying out, and love it. I use plain cold water on my face and organic coconut oil. I've even used shortening as hand cream in the cold winter on occassion. Luckily I do not have dry skin and the olive oil works for my body in our cold Canadian winters. I love taking cold winter walks that doesn't involve breathing in laundry products, for covering my mouth fogs up my glasses.
You need a great sense of humour with this illness, and the willingness to learn from one another, in what's important to and for us individually, and what work's and what doesn't work for us again individually. The important aspect is to get the information our there to help the others who just getting the disorder, for others who just don't get it, and the ones who are learning the hard way as it takes patience and compliance to survive. It's not a one person disorder, disability as it involves your family and friends to have a good, good life. Now, if I could just go back to work without difficulty, not having to worry. I now need to recover from their last attempt to clean and prepare for H1N1 using strong javex to wash the floors and the keyboards and bathrooms with clorox. The workplace does not appreciate that we are all different and for all the more reason we need to continue to be advocates.
I love it when men speak up, because people tend to think this is only a woman's issue (nagging, complaining, 'attention seeking', etc.
So thank you for speaking out, we need to be united, and do one important thing - give the new comers an advantage of what works, what's most important and providing lots of information.
-
- +0
-
-
written by Yong, March 01, 2010
Maff, humor is laughing at tragedy and that's all you can do when your chips are down....By the way, I use white vinegar for my laundry.....balsamic would go better on greens...
Once again, some of the other commentors's suggestions would give me a SEVERE allergic reaction but it's all about what works for you.
I have been doing an intense steaming ( sauna and steam room ) when I feel that I have been exposed to alot of toxins for the week. One steam room used eucalyptus oil for healing purposes but my stomach got bloated so I had to find other places that do not use scented oils....it's still a struggle, at times.
The last commentor hit it on the nail about how emasculating this disease can be ( It's like the old Victorian concept of the ladies with her " fainting spells " )....but I realized modern times lead to modern toxins and perhaps, modern attitudes about masculinity....Good luck.
-
- +0
-
-
written by hennhouse5, September 02, 2010
I wear a mask in stores, sometimes I double it, when I do that it is like my mouth and nose are getting a sauna
. I also have a small air filter for the car, sometimes I have to hold it right in my face. I recently signed up for a computer class wondering what I was doing, how will I ever be able to stay in the building? I found if I bring my big room filter and point the clean air right at my face, I can stay. Thank you kids for helping me so much and being willing to walk with "the masked lady".
-
- +0
-
-
Show/hide comment form
Thank you so much for posting your experiences and tips. There is nothing more heartening than to see someone who has suffered and endured so much maintain such a great sense of humour. I felt a big smile creep across my face several times reading your post...and I am very tempted to get myself a 'Dora the Explorer' toothbrush to put a smile on my face after I've dragged my behind out of bed in the mornings too
I'm sure your tips will help some out there with EI but you are right...everyone is different we have to find what works for us. I went through much the same process (and still am really).
A note on washing in vinegar. Is it white vinegar you are using as most people report this doesn't leave any kind of staining so you wouldn't have to rely solely on your (very) sunny disposition!
Thanks again and all the best