Success!

    Ha!  Bet you thought "success" was referring to the ranch dressing recipe.  Nope, but I'm working on that today so it's not "throw some of this together and it should taste pretty good."

    No, "success" refers to how things have been going this past month in reference to Brittany's health.  It is such a good feeling to be able to say that after such a long time of being on high alert, alarming incidents, finding out that yet another thing was making her sick and having a 20-minute venture outside the house end up in disaster.  You hear that saying about living one day at a time, and trials like this teach you how that works.  All you can do when things are so intense is live in the now, maybe only living moment to moment because that is literally the only thing you have any control over.  And I can't count how many times I had to give moments over to God when I didn't even know what to do (some of those moments came around 2:00 or 3:00 a.m.).  It's amazing how He has carried us through all of this, often bringing things to my mind to do that I would have never thought of.

    One of the problems that the corn allergic are faced with is that medicine and medical/hospital procedures are loaded with corn derivatives.  So when one becomes sick or is dealing with an emergency situation, you really do have think twice or three times before running to the emergency room.  The adhesive on bandages is corny, IVs are filled with glucose, pills have cornstarch in them to hold them together (gel capsules have glycerin, also usually derived from corn) and usually have three or four additional derivatives in them.  Not to mention cleaners and others agents used to sterilize.  They all have derivatives in them.  It's a minefield.  And if your symptoms are scary enough that you carry an epi-pen you have to really evaluate whether or not it's worth it to use it because when you use an epi you HAVE to get to an ER for further treatment.  Epi-pens are for life-threatening situations, but if personnel at the hospital won't listen to what you are trying to tell them about the allergy and insist on doing what they are familiar with they can make things worse.  It can be a really scary situation.

    One of the solutions is to have medications compounded free of allergens.  In Brittany's case, the doctor has to write ON THE PRESCRIPTION PAPER, "to be compounded corn, wheat, dairy and soy free."  And then you need to be prepared to make your case at the compounding pharmacy, derivatives list in hand (there are 183 by the way; I counted them), as you inquire what the capsules and fillers are made of.  "Veggie caps" sound really good to most people, but that is a red flag for the corn allergic because--guess what--the veggie of choice is usually corn.  Most people don't even have to give a second thought to what the vegetable content is.  Our compounding pharmacy has been great for the most part and we finally got things down to a groove with getting Benadryl compounded in clear gelatin capsules (the ones with a white stripe were a no) with only the active ingredient.  They were so nice about it, but when I realized that not having an inactive ingredient to add to it makes it more time consuming I started bringing our own tapioca starch.

    Even with a compounding pharmacy available, I learned the hard way that not all medications can be compounded.  So I found myself in the position of needing to learn natural/home remedies to treat common illness symptoms.  I found that by catching symptoms as soon as they started we could usually kick the illness within a couple of days, and sometimes within hours.  I've learned the value of essential oils and knowing how to use them, colloidal silver, various herbal teas and one of my favorites, mixing equal parts cinnamon and honey for flu and fever (boy, does that one work fast).  So now I am a proud card-carrying member of the "crazy" population who rarely goes to a traditional doctor.  I don't hate doctors.  They just can't help my daughter most of the time because of her situation.  And the cool thing is, we are healthier in those regards than we have been in years, and I have been able to treat what has popped up successfully at home.  It's awesome.

    That rant was the circuitous route to me just simply saying that things are finally better.  When we first found the forums online that helped us figure out all the places corn was hiding, people told me to be prepared for increased sensitivity as we got the last of it out of her system.  Yeah, buddy--I had no idea what we were in for.  After a little honeymoon period of her doing gloriously better it seemed like she was reacting to everything. Once her body got rid of  those last traces of corn, it was on high alert.  Now, with the help of methods used in natural medicine, her sensitivity level has gone down significantly and her recovery time when she does get a more serious accidental exposure has gone from about a month to her still being able to function pretty well the next day.  Here are some recent examples that have driven it home how much better she is doing:

    After not daring to enter a movie theater (translation: POPCORN) since seeing Transformers 3, we went and saw The Hobbit about three weeks ago.  The Hobbit was the one movie Brittany dearly wanted to see in the theater when it came out, and even when other movies looked appealing she would say she was saving up and that was the only movie worth braving a bad reaction for.  When it came out, things were just too fragilly balanced and easily disrupted to risk it.  My husband and I went and saw a movie several weeks ago and I noticed that The Hobbit was down to one showing.  I suggested we take Brittany if she felt up to it before it hit the dollar movie theater, because this theater is newer, bigger and not nearly as saturated with popcorn residue and airborne stuff.  She won't go near the dollar theater.  We bought tickets in advance for the following night, spoke to the manager following our movie and explained Brittany's situation, asking him if he would be willing to let us enter the theater through the back doors so she wouldn't have to deal with the concession area with the popcorn machine.  He was great about it, gave my husband his card and said to just call him when we got there and he'd take care of it.

    Originally we had thought the best game plan would be to go on a really random day of the week to the first showing of the day, where there were more likely to be fewer people and no popcorn being popped.  But we ended up going on a Saturday night and the only showing was at 6:30.  Brittany wore one of her masks (the one made specifically for people painting to help with paint fumes) and we went.  We were able to stay the whole time and she loved the movie! I have to admit that I was watching her as much as I was watching the movie, both watching for reactions and wanting to see her enjoy it so much.  She did have a headache, but it wasn't nearly what it would have been once upon a time.  When we got home we had to do some damage control using quercitin, benadryl and bentonite clay.  I thought for sure she wouldn't be able to function the next day (one of the scariest symptoms has been numbness of the limbs and her legs giving out on her), but she got herself up without help, cooked a lot of her own food, and was able to move about pretty well for the most part.  It took a few days for her to feel up to about where she was before the movie, but she said it was worth it. :)  Once upon a time, we couldn't have even considered setting foot in a theater; the consequences would have been too dangerous and it would have been a guaranteed 3 weeks to a month of recovery time where any little exposure would have a serious effect and make things worse.

    This past week we had two incidents happen within two days of each other that had me saying some naughty words and wanting to kick something.  The first one happened at the end of an otherwise wonderful day on Friday where Brittany was able to leave the house and we did shopping for a few hours, running errands and looking at shoes at the mall.  We ended up at Walmart for a few things, and as we were getting ready to finish I decided I wanted to get some new bathroom towels.  I picked up a couple and put them in the cart, then had the thought come to me that we should muscle test (I will do a posting on muscle testing at another time; very valuable tool to have) to see if the towels were safe for her to use, since corn fibers are being starting to be incorporated into fabrics more and more.  I'm pretty good at muscle testing but occasionally miss something, but Brittany is failsafe at it.  So I handed her a towel and asked her to test if it was safe for her to use.  Turns out we didn't even need to muscle test; the second she touched the darned thing her hands turned red and she had a rash working its way up her arm.  My immediate thought was that we needed to wash her hands so rushed her to the bathroom, where it got even worse because they had just cleaned it and the chemicals they use there are so highly fragranced (fragranced anything contains corn derivatives; room fresheners are a nightmare, as well as cleaning supplies and perfume).  I got her to the shoe department to sit down because by then she was pretty wobbly.  I said many naughty words during the course of this whole thing--I was so mad, because until I had her touch the darned (or naughty word) towel she had been doing fantastically well.  Mad at the situation and mad at myself for not having the presence of mind to test the towels myself in the first place, and mad at myself for failing to remember how smelly their bathrooms are.  Brittany will confirm that I probably scared a few people.  I was afraid she wasn't going to be able to walk out of the store, but a few minutes later she said, "Let's go; I'll be fine."  As we were walking she told me she had quietly said a prayer, and she could also feel some adrenaline going to work.  We made it through the checkout and to the van, where I texted my husband to be ready for us when we got home because he might have to carry her into the house.  The adrenaline let down once she got settled in the van and she started to fall asleep; it scares me to death when this happens because there have been a few instances where her blood pressure and heart rate have dropped suddenly as a reaction and I've had trouble waking her up.  My husband got her into the house and I thought that was it for the night.  He got her settled onto her bed, and--30 minutes later she was up!!!!  She stayed up for a few hours, ate dinner and really did pretty well.  I thought for sure she was going to be out of it the next day, but she was up and about before I was.

    The incident that happened a couple of days after that was on Sunday.  We hadn't had a roast for Sunday dinner for several months, so I got one Saturday night from Sprouts.  We have to be very careful with meat; aside from the issues of what the animals eat and whether or not they are raised on antibiotics and hormones, there is also the issue of how they are washed after butchering.  Most commercial meat is washed in solutions of lactic and/or citric acid, and the majority of those used commercially are corn derived.  Two summers back we purchased ground beef, roasts and round steaks from a local rancher after verifying safe processes, and that was a very good experience.  Once that meat ran out, though, I was fortunate to be able to identify some meat at Sunflower Market, which was then purchased by Sprouts.  Their 100% grass-fed beef from Uruguay, not only the ground but the cuts, as well, has been a great experience.  The only caveat has been that I can't buy what's already packaged because of the soaker pads that are in the bottom of the meat trays, because they are soaked in citric acid.  Their customer service has been amazing, and they have been willing to cut the meat from the back and package it without the pads.  We've done this so often that they know me on sight and usually know what I want before I even say anything.  It's been such a consistently good experience that I didn't think to muscle test or double-check what the labels said.  Brittany had a horrible reaction to it on Sunday, and I realized that it didn't say "from Uruguay" anymore, so they must have switched suppliers.  Something with the processing before they get it makes it unsafe for her to eat, so I won't be able to buy it there anymore.  This reaction was very sensory; I could tell she was getting agitated and hyper-sensitive to noises, etc.  She had trouble focusing and hearing what people were saying to her.  This type of reaction is what I've seen other corn allergic people refer to as "my IQ drops several points."  It's miserable.  Once I cued into what was going on we pulled out the Benadryl, quercetin and coconut water.  Again, I thought this would mean backtracking to how recovery time has been up until so recently, but she pulled through it pretty well and was up at a normal time the next day.  She has had to take it easy, but she's been able to function.

    So that is why I titled this one, "Success!"  Success because she's not flattened.  She was feeling so good yesterday that she exercised and overdid it.  THAT is awesome.