Relapsing: Down, but Not Out

Sometimes life has a way of handing you lessons you never even realized you needed to learn and often times a lesson you never really wanted to learn.  This illness has been the single most humbling experience of my entire life.  Everything about my life I once knew and depended on has been turned into something that now feels like a vapor. It’s just gone.  The most frustrating thing is that when you’re sick like this, you never get to take a timeout and recharge.  But things were gradually getting better after we returned home from treatment in June.  We were hopeful, encouraged and starting mentally “almost” making plans for the things I would do in possibly a year’s time and then . . .  it all fell to pieces.  A little over three weeks ago I started to notice a change in my body.  At first it was little things and then, well, it quickly became everything.  Formerly non-allergenic foods started to cause major issues. Even my own dental mouth guard started to bother me.   The scent from chemical particles started to become more intensified when I didn’t feel that was possible.  The last two times I received my Gammagard (gamma globulin) infusion, I swelled up BAD and reacted w/ horrible all over itching.  In previous weeks I had nearly NO reaction to this medication.  Something had gone horribly wrong.

 

When we last left off, I shared with all of you our need eliminate toxins and provide me with a better indoor environment in our home.  This would help lower my allergic load and allow me to heal and become less affected by every allergen exposure.  Per the advice of Dr. Rea, associates, and other environmentally ill patients, we were strongly encouraged to start with the bedroom.  It is, after all, the place where a person theoretically spends 1/3 of their life.  So we dove in…Oh did we ever.  People who are desperate for something better tend to act fast.  Perhaps irrationally so.  People who have young children on a tight schedule with impending school start times tend to act at LIGHTENING speed.  We would be those people.  Our plan for the master bedroom/bath began with the most critical aspect: the flooring.  Rip out the master bed/bath carpet and install porcelain tile.  It sounds simple enough, doesn’t it?  And although it is hardly a non-labor intensive project for those producing the final product, it really IS a pretty simple order.  That is IF you’re not environmentally ill, and therefore allergic and affected by nearly everything . . . which I am.

 

Here is where the humbled become, well, even more humbled.  Both my husband and I consulted with one of Dr. Rea’s associates from the center, Carolyn Gorman, the author of “Less-Toxic Alternatives: A Complete Guidebook for Natural Healing, Gaining and Maintaining Optimum Health,” before we decided to pull the trigger on our “little” project.  We consulted her because she, as well as Dr. Rea, is familiar with the process of detoxing one’s home and creating a safer, healing, environment. The majority of products used in today’s typical home construction are full of things like petrochemicals, formaldehyde, ammonia, polymers, etc.  These ingredients can cause adverse health effects to some humans and the environment.  Some people may only see the effects of them when exposed on a regular basis or later in life.  However, people who are environmentally ill and suffering from multiple allergies to foods, mold, chemicals, etc. can become immediately and severely impacted by exposure to them.  Unfortunately, despite the advice of an educated professional, we managed to massively mess up this home project because we didn’t really heed all of her advice.  Finding safe products is hard, if not impossible and we were on a mission to get things done – fast.  (Here’s a good lesson if you’re environmentally ill: Nothing happens fast. Nothing.)  Despite the existence of MSDS sheets, it is extremely difficult to find the exact ingredients in these products.  We researched a lot of products, and selected stuff that we thought would be ok.  Then we successfully interchanged the ingredient list for one grout with another and in doing so chose a grout that even our misguided minds would never have used (in hindsight the ingredients we thought were in it weren’t very good either).  So, we managed to use backer board and most horribly an incredibly wrong grout that contains polymers, petrochemicals and aldehydes.  In the words of Carolyn Gorman whom I recently spoke to regarding our colossal mistake: “You used about the worst possible thing imaginable.  Your husband and children should not even be going in there.  Crack the windows, close the door & tape it shut.”  And so we did. (I should note: the grout may be “cured” but it can potentially off gas for up to a year and we can’t handle having this stuff in our house for a year.  )

 

So the other family members are protected, but it appears as though the damage has already been done to me.  The chemicals in the products we used have done a real number on me. I tried repeatedly to sleep in our bedroom, and never awoke feeling refreshed and better.  Instead I would awake gasping for air ar 4:00 a.m. or w/ a migraine and often times felt dizzy and foggy headed when I went in there.  My body never acclimated to the environment, but we just kept waiting, thinking the floor needed more time to cure and off gas.  Apparently the just the aldehydes alone (used in the grout) can actually become a sensitizer in the human body.  I have no idea how one knows this, but I can only attest that my already ridiculously sensitive and sick body has become even more so.   It’s disheartening to say the least.  There have been many tears shed and cries of frustration and anger.  We realized our huge error about two weeks ago, but my emotions were running much too high to compose anything about it. 

 

It is what it is.  What’s done is done. Where do we go from here? 

 

We recently had a telephone consult with Dr. Rea and he feels the project can be salvaged. He feels that we can save the tile and make it a safe room for me by having the bad grout chipped out and safe grout replaced.  At this point in time, he is advising us not to use a sealant.  Even a low-toxic one would probably be too much for me.  This is something we can revisit in a 6mos.-1 year.  I already have a sample of a low toxic sealant that came recommended.  At this point I have not been able to find any unmodified grout that is truly safe, so we may have our contractor make a homemade grout with Portland cement and fine sand w/ color pigment added so it doesn’t look like concrete.  I’ve already ordered a few pigment samples.  Even finding out if there is an unmodified Portland cement to use is proving to be a challenge.  Finding unmodified products is REALLY, REALLY challenging.  There aren’t a lot of pigment choices, but I really don’t care at this point.  I just want my bedroom back and a house that isn’t rapidly poisoning me. 

 

The game plan for now is that I will return back to Dallas to stay in safe housing.  I have no choice because I don’t have anywhere else to go.  This is probably a wise decision, as I’m sure I could use some further medical evaluation and allergy testing, since I appear to have developed new allergies.  Our hope is that by getting my overall toxic load down from staying in safe housing, I will be able to return to our home once the project is complete and the area has been thoroughly cleaned.  Unfortunately I will be on my own this time, as my husband needs to be home with our children and keep up with his career.  This will be a little scary and challenging for me as I can’t even put gas in my own vehicle, nor shop for groceries, but as Blanche Dubois famously said: “I have always depended on the kindness of strangers.”  Poor Blanche.  :o(  I think I’ll come out of this a little better than her.  God will see me through this time and put good people in my path who can help see me out.  People I haven’t even met yet.  And besides, it’s a short flight to Dallas for my hubby

 

Recently I read Mark Batterson’s book  “Primal: A Quest for the Lost Soul of Christianity.”  The following quote is something that really stuck out to me, though he wasn’t referring to chronic illness in this particular text.  I still feel like it’s applicable and it’s the type of mindset I feel I need to adopt to make it through this very difficult experience:

 

“I’m absolutely convinced that the greatest predictor of success in any endeavor is persistence.  It’s not only how hard you try, it’s also how long you try.  We tend to overestimate how much we can accomplish in the short term.  But we underestimate how much we can accomplish over the long haul.  Why?  Because energy is exponential.  The harder you work and the longer you work, the more it pays off.  Energy turns into synergy.  And that persistence pays off.” 

 

Each human body is a vastly unique and often times unpredictable.  I can’t say definitively what my body will and won’t do in any length of time, but I have some knowledge from experts in the field of environmental illness and those who live with it every day.  We could work ourselves silly trying to make a better life for me and never see any pay off.  That could happen.  But it’s far more likely that our persistence WILL pay off. 

 

I pray.  I pray a lot.  But prayer without action is empty.  I may not be capable of doing much right now, but I have many capable people in my life and I have a spirit within me that says “Don’t underestimate these efforts.  Even when you falter and make mistakes, you’re still on the right path.” 

 

We are down, but we’re not out.  :o)

My Big Fat Overdue Update

This is a LOOOOOOONG overdue update, but I’ve been completely overwhelmed with finding a replacement car, administering/understanding new treatments, rotation diet planning, and home improvement. In the interest of attempting to over simplify an overwhelming quantity of information, I’ve decided to break everything down in sections.  Bless you all for reading & trying to keep up w/ me!  Thank you SO much for checking in.  My apologies to those I haven’t directly responded to.  I have just had my hands in so many different pots that I have really let the blog slide.  All for a good purpose, of course. :o)

Car Replacement: After my “safe,” well aged (off gassed), non-perfumy car was totaled in the storm while we were in Dallas, we had to rent a car to drive home.  A sweet friend was kind enough to ship me her high powered ozone machine to minimize the damage.  It helped . . . some.  However, a ten hour drive in a new, off gassing vehicle, is going to take its toll.  I made it about six hours before I started to pray for death. (LOL!)  After much research, I’m pleased to report that we’ve found a lovely replacement vehicle.  It’s a beautiful six year old Lincoln and it stinks to high hell.  This car was detailed so meticulously that it actually now has a very good recreation of the “new car” smell.  Lovely.  So why did we buy it?  Because we gave up the search for a scent free car & the price was right.  Scent free or mostly scent free cars just don’t exist.  If it’s not cleaning agents, it’s perfume; if it’s not perfume, it’s cigarettes.  So we will keep working on this car w/ our ozone machine and eventually it will be tolerable for me.  There IS an upside to all of this . . . My husband has been working very hard on my minivan to make it acceptable to me and he has made great progress.  I can now be in it for approximately 40-45 minutes w/out horrible reactions.  I’m THRILLED!!! 

Pets: Our furry feline friends are gone.  A dear family member has given them a home.  My children have very mixed emotions about this and frankly, I do too.  Mostly seeing their tears of longing for their pets keeps the wound still there.  But on a regular basis, we all seem to do pretty well. Honestly though, I’ve noticed a slight improvement by not having them in the home.  Their hair and dander is still everywhere, but we are very gradually reducing it.  Any tips on residual pet hair removal? I’m all ears.

Treatments: Upon completion of all my testing at the Environmental Health Center in Dallas, I am now armed with several treatments.  Currently I have about twenty vials of various antigens for foods, molds, mycotoxins, chemical, hormones and candida. Though in total, I’m actually being treated with 50+ different antigens because most vials contain more than one food, mold, etc.  Additionally, I am now also armed with an immune boosting vial created specifically for me.  This vial is actually considered a vaccine and it is called Autogenous Lymphocytic Factor (ALF).  This vaccine is created from my own blood.  It is designed to establish my own personal immunological blueprint.  This blueprint will contain specific antigens that are only found in my cells.  When these cells, called lymphocytes, are placed in a cell culture, the weak die and the healthy grow robust.  In 2-4 weeks, many extremely healthy cells exist.  Upon completion of this process, the ALF vaccine is made.  The hope is that ALF may assist my immune system to lessen hypersensitivity and allergic reactions.  It can boost my immunological response to pathogens.  It doesn’t work for everyone, but many patients with hypersensitivities to foods, chemicals, molds, etc. have been helped by ALF.  Some find relief right away, but often times it can take months. All of the above vials (injections) are rotated every four days, so I only have to poke myself about five times/day.  Typically most patients need to be treated consistently with these antigens, and immune booster, for 18 months before full results are achieved.  Everyone is different.  Some of them may need to be a part of my daily life for years.

Furthermore, I am also being treated with IgG therapy with a product called Gammagard.  Gammagard is a subcutaneous infusion that I receive once/week in my home.  Initially a home health nurse administered this medication to me, but after some training my “quick study” husband is now able to administer it.  This medication can be given intravenously, but the form I receive is a subcutaneous infusion that takes about an hour.  (May I just pause here and say: “Thank GOD my husband doesn’t have to poke my tiny veins!”  Needles don’t bother me all that much, but the one exception is an IV.  My veins just don’t cooperate with them.)  Back to Gammagard.  Gammagard is a treatment created to replace missing antibodies, also called immunoglobulins (Ig). Naturally occurring antibodies protect the body against infections by attaching themselves to invading germs (pathogens). This makes it easier for other immune system cells to locate and destroy the germs. Since there are different types of germs, there are different types of antibodies that bind to specific germs. One type is immunoglobulin G (IgG) antibodies. IgG antibodies are formed in large amounts and work in the blood and body tissues to fight germs. (Totally stole that off their website – so there ya go, credit where credit is due).  This treatment is, in my words, pretty “hard core.”  Those recovering from long battles with cancer have received this treatment.   The rate for allergic reaction and side effects is relatively high, so I met my first infusion with great excitement as well as trepidation.  The first two treatments didn’t go so well, but I’m pleased to report that I’m doing much better w/ subsequent instillations.  My fifth treatment was yesterday, 7/30/12,  and I did really well with it.  My treatments are scheduled to continue for a full twelve weeks. At the end of twelve weeks, my t-cell counts will be re-checked to see if my immune system is responding favorably.  As a side note, this is a blood product, so a very kind thank you to all of you who donate blood. 

Rotation Diet: Part of healing also includes dietary modifications.  I wasn’t really eating anything but fresh, home cooked, bland food anyway, and my options were quite limited due to my corn allergy.  Technically, I could say things have gotten worse because I’ve since discovered many more food allergies through testing, but knowledge really is power.  At least I now know that some of my reactions were actually to that specific food or food family and not solely due to corn cross-contamination.  So some foods have been closed to me, while a few others have been opened due to the corn antigen.  Every food I eat is a whole food.  I cannot eat any recipes and here is why: Because I tested positive to a very large number of foods including all nuts, grains (except white rice), various vegetables, a few fruits and several animals (meat), this limited the number of foods I could rotate.  I currently have about 24 foods I safely do not react to.  Unfortunately a few of those are oils and things like lettuce, which aren’t very filling.  (My options WILL expand as I continue to heal.) The rotation diet is done on a four day basis and it’s HARD.  Obviously it means I can only eat a particular food once every four days, but it goes beyond that.  I also have to rotate foods by trying not to eat foods from the same family in one day, as well as only eat from that food family every other day,  rotate oils AND I can only eat one food once/ day (no snacking on it – when I’m done, I’m done).  Example of how this works: Mon. – black beans, Wed. – cannellini beans (no legumes allowed on Tues.)  Another example: Tues. – chicken (can’t eat chicken again until Sun. Thurs. – eggs (can’t eat eggs on Wed. b/c they’re in the same food family as chicken)  It’s insane.  I spent 90% of my time in the kitchen.  Honestly, I’m not perfect w/ this diet, but when you only weigh about 100lbs and have 24 foods to rotate through, perfection may not be the ultimate goal.  So, what exactly is the reason behind this insanity?  The objective is to keep the non-reactive  foods safe.  Food antibodies take four days to clear your body and by rotating on a four day cycle my body doesn’t have the opportunity to develop allergies to these precious safe foods.  This is also the basis of treating with the allergy shots on a four day rotation as this ensures that the body is remains neutralized to the allergies being treated.  When I’m able to reintroduce foods for which I have been treated, they will be reintroduced using this strategy.  

Home detox: Wha-wha-what!?  She’s detoxing her house?  Is it on drugs!?  HA!  Wellll, in a way it kind of is.  When I was initially diagnosed with a corn allergy, we started going on a rampage to “de-corn” the house.  Corn is in everything, so my feelings were that we should just throw everything away and start over.  My mentality on this is slightly altered from before.  My new goal is to have a less toxic home overall.  Currently I am on an antigen for corn and I do believe it’s helping.  Am I going to dive into a bowl of popcorn or even allow it to be popped in my kitchen – hardly, but the minute amounts of it (like vegetable washes, trace cross-contamination, etc.) are becoming less of an issue.  As a part of my treatment, Dr. Rea explained that I need to reduce my overall toxic load.  The most logical place to start is the bedroom I sleep in.  From there, we tackle cleaning and eliminating the many offenders in the rest of the home.  As I am typing this, we are having new tile installed in our master bath/bedroom.  If this goes well, not only will I have a lovely new floor in my bedroom, but I might actually be able to go in my bathroom & closet again!  I did say “if” because this is a gamble.  We’re gambling that I will be able to tolerate the smell of the thinset, fresh grout and tiny amounts of formaldehyde & other chemicals that will be released from it.  Formaldehyde, as you know, is in practically everything.  It is a huge concern for the environmentally ill (chemically sensitive). The chemical smells coming from there are pretty intense for me.  While I’m very excited about this new possibility, my husband and I are concerned that I may be sleeping on the couch for a while.  Sometime this weekend, I should know if I will be able to go back into my own room.  (fingers crossed)

At the end of the day, I still remain optimistic that much improved health is in my future.  Our family is already starting to see little glimmers of hope and improvement.  I continue to work very hard & my husband  remains continually devoted and works his tail to the bone for me.  Our family and friends are doing anything they can and many who don’t even personally know me are keeping me in their prayers.  My faith in God to see me through this has turned into an awesome, unwavering faith that even surprises me, but it’s there.  God is ALWAYS with me.  I will be okay.