Wednesday, 23 May 2012

Visit to Environmental Health Center

Greetings from Tejas!  No, we haven’t moved away from the corn belt, but this is temporarily home until the middle of June. On May 20th, the hubs and I set out on the 10 hour drive to Dallas, TX to see Dr. Rea and his staff at the Environmental Health Center in Dallas.  The journey wasn’t easy, but we made it.  We HAD to do the drive all in one day because I could not tolerate a regular hotel room without getting verrrrrry ill.  I haven’t been inside the interior of any building other than our house in nearly four months.  Just preparing our twelve year old vehicle for the drive was a bit of an adventure, which started with an inspection and AC repair and then got well, weird. LOL! We actually have a newer vehicle that would be more suitable for road trips, but it has a lot more plastic and various smells from my “former life” with lotions, hand sanitizers, children’s snacks, etc., so it wasn’t a contender.  I can’t even sit inside of it anymore.  Hubs went nuts with the shop vac on our old car and then used a remote controlled ozone machine.  It definitely seemed to help.  At some point, he’ll have to try these things on our newer vehicle, which sadly, used to be mine.  I wore my mask for the entire trip (fun!) & covered my face with a carbon blanket/scarf type thing that a friend made when we had to stop for gas.  You’ve been spared many details of our stops during this trip.  Consider yourselves lucky.

While staying in Dallas, we’ve rented an environmentally friendly “suite” at the Marriott Residence that is in a building that is owned and managed by the Environmental Health Center.  Everything in the room has been done in a way that makes less of an impact on a person with environmental illness/allergies.  The room has not been renovated in a long time, but that is actually a good thing for people like me.  New things off gas into the air and the fumes can certainly cause serious symptoms.  All of the flooring is tile, the beds metal, the sheets and blankets are organic cotton, the blinds are metal, the sad cookware options are metal and all of the furniture is metal.  There are no curtains and no table or computer desk.  The place is really small, but a desk would be nice, as the couch is actually a futon, so computer usage equates to the worst possible posture EVER (AKA, appreciate this blog . . . it hurts! LOL!) They also provide air purifiers like the ones I use at home.  We actually brought one from home, just in case the ones they have might have developed a smell or something from the previous renter.  So far, everything in the apartment is treating me well and I feel better here than at home.  Unfortunately a previous tenant obviously used aftershave and stored in in a bathroom drawer, which is against the scent free rules, but we just don’t use the drawers (just like home). 

My days at the center start at 9:00 and last until 4:00/5:00 p.m.  This full schedule will continue for the duration of our time here, which will last until approximately the middle of June. We are still very much in the diagnostic stage, but I feel things are going well.  For a corn allergic person, just having blood drawn can cause a reaction because of the antiseptic used or the adhesive to cover it.  Fortunately, my skin has not reacted to what they’re using and we brought our own medical tape.   We both like Dr. Rea and feel he can really help me to gain some, if not all, of my freedom to live a more “normal” life again.  Areas we are currently testing are foods, molds, and general immune function. 

Every day I do a pretty long round of subcutaneous allergy testing for molds and foods.  We will test for other things like chemicals, pollens, etc. in the future.  Right now, we’re testing on some foods I’m currently eating and a lot of common molds.  Dr. Rea wants to get an idea of how well I’m doing with the few foods I regularly eat, since I’m unable to rotate.  When someone who is prone to allergic responses routinely eats the same thing, they are at an increased risk of developing new allergies to those foods.  Food rotation is a very good idea for most people.  Unfortunately, because corn contaminates soooooo many very basic foods like meats, dairy, produce, nuts, etc., it is very difficult to find enough food to rotate.  Today we learned that my instincts were correct about oats and wheat.  :o(  I hadn’t been eating wheat in a long time, so I had to eat a few crackers a few hours before testing and I felt like crud. They are both common allergens and since they’re grains, and I’m already highly allergic to one grain, there is a higher chance of being allergic to others.  (Note: rice and sugar cane are also grains.  Sometimes people tend to trade one grain for another & go wild with it, so be careful if you’re experimenting with grains when you already know you’re allergic to one.)  On the upside, I am NOT allergic to coconut.  I eat coconut, and coconut oil frequently and also use a lot of personal care products that contain coconut, so that is a huge relief.   Also, I am not allergic to eggs.  I’m border line on turkey and potatoes, which I also consume frequently. Turkey is the only safe meat I can eat right now and only the Empire Kosher Organic kind from Trader Joe’s.  I’m going to have to stop turkey for a while and try it again in a few weeks.

My husband and I are quite impressed with the technique Dr Rea uses to tailor his allergy testing for each patient.  His office is able to perform testing that identifies the exact level of allergic response.  They accomplish this by iterating on the dosages until they identify the specific level for that patient.  There can be infinite combinations of the dosage and strength.  To accomplish this each step change in the testing routine is five times less than the previous dose.  Example: Oats - he started me at dose level one, which is the highest amount.  I reacted, so he lowered to dose 2 (cut five times) and I reacted again, he went on to dose 3 (cut five times again) and I stopped reacting.  And in case you’re wondering, an antigen for oats can be created and I can do allergy shots to try to gain oats back again.  Because my reaction to oats wasn’t horrible, there is a good possibility I will get to have oats again at some point. :o)

Testing has also revealed another suspicion that I had: mold  Using the above example, I tested positive at levels 6 and 7 to two to three groupings of molds.  This means I’m actually QUITE allergic to various molds and we’re still testing.  He is careful not to test too many things in one day, particularly molds as he doesn’t want to overload an already delicate and damaged system. Treating mold itself and a mold allergy can be quite difficult to manage.  Again, a custom antigen to specific molds can be created for me.  We were told that food allergies, when food antigens are used will clear faster than mold allergies, again with antigen use.  This info. is most helpful, as it’s starting to put some puzzle pieces together for us. 

A couple of months ago, I became unable to tolerate our bathroom due to what I believe was a mold issue.   My husband cleaned the VERY obvious mold in the shower that had gotten out of hand.  After this hard core cleaning, we ran an air purifier and vent fan for 2.5 weeks to get rid of the smell from the “environmentally” safe cleaner that nearly knocked me over.  (If anyone’s searching, it’s called Vital Oxide & it can be purchased online at The Allergy Store.  Corn allergic & chemically sensitive beware.  WORKS well, stinks to hell!) Once the cleaning smell dissipated, I could, once again smell something (Poor hubby, he worked so hard) I described the smell as “biological, not clean and earthy.”  He didn’t smell anything .  I don’t think it’s the only underlying cause for what has happened to me, but I do think it has a compounding effect and may have been affecting me greatly without me even realizing it.  If you’ve been keeping up with me and/or this blog, you already know that our family lived in England from early July ’11-late Jan. ’12.  I can’t think of many places that would be much better suited to harbor mold in just about anywhere imaginable.  I suspect that being in such a moldy environment contributed to my over sensitivity to mold.  My “allergy bucket” was already quite full and my health was impaired with years of other issues, so I have to suspect that traipsing about in old buildings and castle ruins and riding buses that REEKED of it, did a number on my already ravaged immune system.  Makes sense to me (shrug).  At any rate, there will need to be some considerable changes made to our home to make it more livable for me again. 

Well this seems like a good stopping point, as my back is rebelling to the futon awful.   (How did we live on these things in college?  WOW!)  In all seriousness, I feel very blessed to be here and despite getting sick from the testing and exposure to other people in the center, I feel very positive about this place and what they have to offer.  This just “feels” right and as many know, I am a very spiritual person.  I don’t do anything if I don’t feel the presence of God is leading me to it.  My prayers and talks with Him lead me to believe this is not a mistake.  Things seem to be falling into place.

So speaking of prayers . . . ummm, if you’ve got a few to spare, throw them my direction around 9:00 a.m. CST tomorrow.  We’re testing another food.  It’s one you might be familiar with.  I call it many things: “satan,” “evil,” “my nemesis,” and a few words I won’t share.  You might know it as “corn.”  The test HAS to be done in order to make the antigen.  Scary? Yes.  Will it hurt? Yes.  Does God have my back? Always. 

G’night all.

Wednesday, 16 May 2012

Bye-bye Books

Bye-bye Books

Today I received a call back from Dorthy, a customer service representative at Seal-a-meal Vacuum Food Storage System.  On Friday, I called to inquire about the bags they use for their system.  After about thirty minutes on the phone, she was able to tell me that the bags were made of a combination of nylon and polyethylene plastic and the inside of the bags were not coated/dusted with cornstarch.  (Oh good, we’re on the right track.  This is rare.)  Okay, next question: “Was corn starch used to dust the exterior of the bags as an aid during manufacturing?” Unfortunately Dorthy was unable to conclusively answer my question. She seemed very interested in helping me (I know, color me shocked too) and asked for my name and number so she could call me back the following week.  I know what you’re thinking: “You’ll never hear from her again.”  But I did!!!  She phoned today with even more info. than I had anticipated.  No, the bags have not been dusted with cornstarch as a packing aid.  However, and she was shocked to share this, “The ink on the box that they come in tested positive for trace amounts of cornstarch.”  Yup, that’s right . . . INK! 

Things have gotten about as weird, and quite frankly, as awful, as I thought they could get.  Within the past couple of months I’ve determined, sadly & begrudgingly, that I am allergic to books.  Though I couldn’t say with absolute certainty, I assumed corn to be the culprit.  I already knew corn was used in a lot of paper products, but my knowledge of its invasiveness was rather limited.  In order to avoid itching, headaches and hand aches, I wear a mask and gloves and move FAST when opening packages, which is frequent.  (I should also note, for the corn and soy allergic, you’ll want to avoid any packing materials that say “biodegradable.”  Biodegradable = corn or soy.  Regular packing peanuts can also be made from corn.) As long as the weather is favorable, this is all done on my front porch.  I’m sure a masked woman with blue gloves and a knife doesn’t concern my neighbors at all.  As of yet, no uniformed men have knocked on my door.  My husband also does a lot of box opening and dismantling, but sometimes he’s not here, so “a girl’s gotta do, what a girl’s gotta do!” My kids try to help me with our mail, though sometimes they find my daily request annoying. 

At any rate, this kind woman’s words of “cornstarch in the ink” prompted me to dig a little deeper into this corny nightmare and here’s where it landed me.  (Thanks to Erica over at Corn Free Lifestyle for the links/info.)

Let’s start with cardboard:

What are the possible corny culprits in the manufacturing of cardboard?

1.Corn starch is used to make the glue

2.Waxes from vegetable oils (could be corn) are applied to make a water or grease resistant container for food products (frightening…)

3.Ink (could contain corn derivatives) is used to make logo designs

“At the corrugating plant, only a few other raw materials are needed to make a finished box. Corn starch glue is used to bond the corrugated medium to the liner sheets. Because so much glue is used, rail cars or large tanker trucks deliver it as a dry powder that will be stored in huge silos at the corrugating plant until it is needed. Drawn from the silo, the dry corn starch is mixed with water and other chemicals and pumped into the corrugator to be spread on the corrugated medium as the layers of liner are added. Other raw materials are used to finish the corrugated cardboard after production. Waxes made from paraffin or vegetable oils can be applied to make a water- or grease-resistant container for food products. Brightly colored inks are also applied to create bold graphic designs for self-supporting displays featuring product name, information, and company name and logo.”


Corn- and soy-based inks are now replacing printer's ink that was made from 100% petroleum products.  Being vegetable-based makes it safe for placemats and packaging where ink may come in contact with our food.  The colors are brighter and more easily recycled, revolutionizing the newspaper industry.  Printing machines run smoother, are easier to clean, and safer for employees.


So when I felt the throbbing headache coming on & my sinuses starting to swell and my ears filling up while reading a new book to one of my young children because I forgot to wear my mask . . . well, I now have proof: CORN! (And to be honest, sometimes the mask doesn’t always prevent it.)

Sometimes, okay lots of times, I so DESPERATELY wish that the answer could be something else.  Anything.  Why? Because it would be nice to think for a second that maybe it’s “fixable”or perhaps just a fluke, or I’m allergic to ya know, some dust in our living room or loads of pollen outside. And that dust or that pollen just HAPPENED to start bothering me at the exact time I began to read that book.  My mind will grasp at these things to not have to face the ugly truth.  Sometimes, I would just like to be wrong and discover that corn is not QUITE as ubiquitous as I originally thought and I’m not QUITE as allergic as I thought.  But no, it proves me right time and time again, and yet another part of my life is ripped away.

RIP Books . . . and magazines . . . and more things I loved . . . I knew it was coming & I had already stopped reading to myself, but I can’t stop reading to my kids.  Today was reality forcing the issue.  So “thank you,” Dorthy.  We both learned something new today. Now I just have one more question: “Got any ruby slippers I could borrow?” :-/