For all the women with EI – You are stronger than you know

I spent nearly all of 2003 in Dallas, TX treating at the Environmental Health Center-Dallas for my environmental illnesses, having a hysterectomy and flying back home to California long enough to have sinus surgery (the reason I came home instead of staying in Dallas is a story for another time).

I posted an excerpt of “Who Am I?” on May 10, 2012.  This was written about me.  Prior to this I wrote a poem entitled “Who Are We?” as a tribute to all the women I had become friends with while in Dallas; women suffering like I was.  There are many men with environmental illness but because I was surrounded by mostly women who were sick the poem was about us.  I only know the female perspective on this illness and cannot comment on how the men feel or to explain what it is like for them to lose what they feel defines them as men.

WHO ARE WE?

Who Are We?

We are the women of environmental illness

stripped of our “identities”

The ones who no longer feel

so “feminine:

Who Are We?

We are the women who

feel older than our years

We were the caretakers of

our families

Our families are now

our caretakers

Who Are We?

We are the women whose faces

are bare, lashless eyes, pale

cheeks and colorless lips

Gray streaks of hair now replace

what was once a radiant

glow of color

Who Are We?

We are the women whose

bodies have been ravaged

We have lost our food, our

electricity, our vitamins and

our organs

We are the women who are

thin and frail

Who Are We?

We are the women who

struggle each and every day

We endure being poked with

needles, baking in a sauna

and countless physiological

and neurological reactions

Who Are We?

We are the women who walk

around behind masks of charcoal

Our smiles and frowns and lovely

lips hidden to the world

We are the women who secretly

cry out in the darkness of our

empty rooms – yearning

for the life we once had

Who Are We?

We are the women who are

stronger than we could ever

imagine ourselves to be

The Women who daily stare

adversity in the face

The Women who have revealed

our true selves to the public

Who Are We?

We are the women who have

given up our identities in

return for new ones

Gone are our contacts, hair color

and make up

Gone are our dressing in trend and

latest fashion-dos

Who Are We?

We are the women who

will survive

The women unafraid of

unmasking our true selves

We are the women who can

say, “This is the real me!”

Who Are We?

We are not the make-up, the

clothes or the hairstyles

We refuse to be measured

by fashion or trend

We are women

and we will fight to

the bitter end?

Advertisements

30 responses to “For all the women with EI – You are stronger than you know

  1. Awesome! I love this poem because it says it all There is a loss of identity, and that is a real struggle for some of us. I love the use of the imagery of charcoal masks, and then the unmasking of our true selves. Can I please feature this on my poetry page? http://the-labyrinth.com/poetry/
    With full attribution to you and links to this page of course.

  2. Thank you Miche. Of course you can.

    • Beautiful poem, I also suffer from extreme mcs and I’m trying to get to Dallas. Did they help you there? I have become reactive to my house I can’t breathe outside this room. I am doing so bad and I’m so scared, I have no place else to go. I have never spoken to anyone that has been to Dallas please let me know how it went. Your help is appreciated thank you.

    • What did you find most helpful there? I am too ill to make it to Dallas and I’m trying to see a Doctor I found through the AAEM Dr Robin Bernhoft. What tests if any were of most relevance? Your help is greatly appreciated thank you

      • Oh my. What did I find most helpful? For me it was testing to see what I was allergic to, doing the rotation diet, sauna therapy, IV therapy. There is so much. I don’t remember what all the tests I had done because it was so long ago. I do remember the ELISA test for molds (the reason I got sick), T & B Lymphocyte Subset Panel, Hair Analysis for Chemicals and Mercury, and others. If I can get my act together this weekend, I will try and look at my folder and see what tests I had done. I have had many many tests done there since my initial test – Urine Organix, Complete Stool Analysis, Neurotransmitter test, and a test for my adrenals.

      • That must have cost a fortune! I appreciate your help very much. I want to make every penny count & try to avoid any tests that are unnecessary. I am totally disabled and have little money from family to work with. How much have you improved from going to Dallas? You continue treatment? Have you gotten any tolerance back at all? I hope you don’t mind all the questions, I am so desperate to get better & you are helping me greatly thank you.

      • It was expensive. At first my insurance was paying for part of it then they quit. Then workers’ compensation was paying for it and now they aren’t. I am not doing the antigens from there now. I still do phone consultations with Dr. Rea especially when I have questions that I feel only he may have the answer to and use the histamine from the Environmental Health Center-Dallas. I am now also doing LDA (low dose antigen)therapy. I needed to do protocols from Dr. Rea at first. I am not cured of my chemical sensitivity but am more tolerant than I was. I have gained more foods back into my diet (almonds, corn, strawberries, oats, lettuce, tomatoes). My mold intolerance and reactions are still very strong but if I should get exposed I recover more quickly. In the beginning if someone walked by me with mold on their clothes I would immediately go into tremors and have trouble breathing.

        My normal isn’t my “old” normal but it is further along than I ever thought it could be.

        Ask questions all you want.

        Another key factor for me was avoidance and getting a safe place to live.

      • I didn’t ask if you have Social Security Disability. Some of the treatments there are covered. I am not sure if you have to pay and then bill or if they bill.

      • I have no ssi do you? I am recently seperated from my wife who never supported me & wouldn’t allow me to talk about mcs or how bad I felt. If she supported me I wouldn’t have become so ill. I didn’t know I would keep getting worse & react to more & more stuff til I would eventually react to the house. My reactions are liver kidney & colon pain & inflamation. Just the beginning of a whiff of something makes me feel like I’m having multiple organ failure. I became bed ridden & found she had been having affairs on me over the past year. I had been a stay at home dad to our 3 1/2 yr old until my wife made me leave, now I’m living with my father and I’m reacting to this house. I have become slightly reactive to this room & totally reactive to rest of house just as I was at my wife’s. I hope I haven’t let myself get too ill to get help I’m scared.

      • Yes I have SSD (Social Security Disability). It can be a fight. I am sorry for your situation and understand the reactions.

      • Sorry didn’t mean to get into my problems so much just to explain my situation to someone who understands what I’m going through helps. The stress of everything has made me get so much worse. How have other people fared at the EHCD that you know of?

      • I have many friends from EHCD. We have all had varying degress of success. As with any protocol it is so individualistic how one recovers from this illness. Much the same as we are all different in how we react to chemicals and mold. I have written a post about the varying degrees of reactions in “Not All Environmental Illness Patients are Equal” posted on May 21, 2012. I don’t know, in my opinion, that there is an absolute cure but there can be improvement and lessening of symptoms.

  3. Beautiful! Who are we ❤

  4. Hi Kathryn

    I had a stool analysis, and a liver function test (the one with caffeine, and aspirin and paracetamol). My gut has only one out of four good bacterias; and there is a bad bug as well. The liver test showed two pathways not working correctly. The vitamins, herbs, supplements, and probiotic have cost me around $300 for a month or so. At least now I know why so many foods are affecting me, and I’ve found the less I eat, the better. Do you have any tips for healing the gut? I know you did a post on probiotics (thanks for sharing that one) but I’ve been reading up on it and many things like fermented veggies, kefa, kombotcha (all forms of fermented), perhaps wouldn’t suit.

    • Yes I have read about fermented products but with my severe mold sensitivities and allergies I steer clear of them. I have taken a product that put good bacteria back in the gut but darn if my brain fog will guide me there. Again, I will have to do some research through my old papers or maybe it will come to me. I have also used betaine and lglutamine. Aha! As I was typing this it came to me. The product I took preparation for my first LDA treatment was Mutaflor. You can read about it at http://en.wikipedia.org/wiki/Mutaflor.

      I think a rotation diet can also help along with cutting back or avoiding gluten if you have a gluten intolerance. I am interested if you don’t mind knowing the names of the tests you had done.

      • Funny, Mutiflor is one of the supplements prescribed but I’m yet to try it as I have to order it from New Zealand (can’t get it here in OZ) and it costs $100. I also have to take Ultrabiotic 45 (away from food); so far I’ve been okay with it. And I have to take Paracea Forte for the parasite/pathogen thingy. Then there is the BioGest ‘Ox Bile’ enzyme before meals, but I’ve stopped because it makes my stomach hurt.

        The test was a CDSA (Complete Digestive Stool Analysis): Escherichia coli was at the lowest end of the scale, as was Strep/Enterococci and Lactobacalli, indicating microbial imbalance. The Bifidobacterium sp was 3, which is in the expected range.

        3+ vegetable fibres, seen on microscopy, indicates possible carbohydrate mal-digestion.

        Undigested meat fibres is a possible indication of insufficient stomach hydrochloric acid and/or pepsin production, which may interfere with proper protein digestion.

        The pathologist found Blastocystis hominis, hence the Paracea Forte prescription.

        Many of the things you post about that are similar to my symptoms, I have cut and paste to show my doctor and ask him. I should have gone to see this one from the start. But who knew a doctor of environmental medicine and an allergist could be so different in the treatment they prescribe?

        Interesting yet disturbing tid-bit of information on Mutaflor link you gave:

        “In 1936, after the long term and intensive stress of being Chancellor and Führer of Germany, Adolf Hitler became sick with gastrointestinal cramps. Dr. Theo Morel gave Hitler capsules of Mutaflor, which contained ‘bacteria cultured from the faeces of a Bulgarian peasant,’ and Hitler, for a time, felt better.”

        Awful, I know.

      • Wow your CSDA test sounds very similar to the one I had done years ago. I have thought about taking a round of the Mutaflor again just to jump start my gut. I was given this by my previous LDA physician who has since passed away. I will speaking to my new doctor in January and may repeat this test and see about the Mutaflor. I remember it being expensive as well. Let us know if you start it and what you think.

        The tid-bit is interesting and yet disturbing as you say. I am sure things are different from 1936. I hope so.

  5. PS, the medical jargon I wrote up in that post is copied from my test. I don’t actually know what I’m talking about. It’s like a new language for me, albeit an interesting one.

    • I wrote a little poem about talking with people and strange words coming from my mouth. This was a reference to all I have learned and new terms and words that I have had to know since becomiong ill. I have sometimes thought that I know more than some of the medical people I have seen because they always give me this strange look when I am talking. Maybe it is either because they are surprised that I know some that I know or want to shut me up because it doesn’t go along with their philosophy.

    • Do you guys see a specialist in East Hawthorn? The protocol is pretty much identical to mine. Having just come away -today- with 2 months supply of paracea. And then I check the internet and find the whole “Blasto” deal to be controversial, AND that paracea is for ‘worms’ yet Blasto is a microscopic protazoa. I was also prescribed Mutaflor to replace the non existant e-c strain (not) shown in my bowel sample. My comment 1. dont take these things willy nilly – get tested and prescribed. It (e-c) is only 1 of hundreds of strains of friendly gut bacterias. I cannot find i/net info. as to effectiveness of these protocols. Can any one assist? 2. The active ingredients maybe cheaper in other products ie E-colii maybe included in other over the counter probiotics.(?) ps ugh disgusting thought but fecal insertions look promising they say!

      • I live in the states and see doctors here. I, too, don’t take things willy nilly. However, I know my intestinal flora is a mess due to years of antibiotic therapy and fungal invasion. You may find that a lot of treatments we take are controversial. For me, however, mainstream medicine just wasn’t working. My levels were practically nonexistent and that is why I took Mutiflor.

      • Your reply is much appreciated! Thank-you – Julie

  6. I know that feeling with the strange looks. But of course you’ve had to learn all that jargon, otherwise you wouldn’t be at the better place you are at now (and sharing it with us). It’s such a wealth of knowledge you have. When I wrote my mould poem, my teacher said it was not really the type to get published unless I shopped it to a medical journal or something like that. So I added footnotes at the bottom explaining the ‘big words’. I like your poetry a lot.

  7. I can email you a copy if you like? I’m not sure but it should go in before xmas.

  8. Pingback: Healing the Gut

  9. Michellina how did your treatment protocol pan out?

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s