Friday, 21 September 2012

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)