Thursday, 3 January 2013

End of Year Recap

My apologies and thanks in advance for those who are sticking with my scattered and infrequent updates.

My trip to Dallas, TX to recover from the incorrect grout that was used in our bedroom turned out really well, though it was longer than expected. While there I was able to recuperate and slowly detox from what had happened.  Through sauna, IV nutrient supplementation and energy work, I came home feeling better than I had in a couple of months.  The trip home was exhausting, but it afforded me the ability to very careful attend my oldest child’s birthday party for about an hour when I returned. The trip also led us to find a used Heavenly Heat sauna for sale in northern TX via a flyer posted in Dr. Rea’s office. In Nov., my in-laws were kind enough to transport it back to our home in the Midwest. Having access to a sauna at home is like a dream. Dr. Rea feels very strongly about sauna usage for detoxification and there were no other options available for me since I am unable to leave our home.  Currently it is having some electrical issues with the heater, but my husband is very handy, so I’m sure it will be up and running again once we receive all of the replacement parts.

Right now I am still a bit under the weather from a “regular person” virus that has kept me down for over three weeks, but I still feel like I am well past the scary point where I was last winter and after the exposure to the incorrect grout. My progress is small and slow, but I believe I’m getting ever so slightly stronger.  I’ve managed to gain a couple of pounds even since returning from Dallas and have been able to keep the weight on, which means a lot.  Dr. Rea re-tested my t-cell counts and immune response levels in mid-Sept. while I was in his office to see if the Gammagard (immune globulin) was making any kind of impact.  Both my CD4+ (helper T cells) and CD8+ (suppressor T cells) rose and my CD56+ (NK cells) which were high, came down.  None of the aforementioned is yet in normal range, but they are close.  After just completing another three months of once weekly injections, I will be re-testing soon to see where I stand.  I suspect another round of Gammagard is in my future, especially because of the virus I am currently trying to fight off.  My immune system isn’t handling it very well.

I’m continuing to take my allergy shots and even added a few items after testing and re-testing in Dallas.  I’ve experienced what I believed were reactions to fabrics in the past, but I never could pinpoint if it was certainly the fabric itself, the dye, something it was treated with, or something I had eaten. Long story short: I’m allergic to cotton, wool and polyester.  My allergic response was thankfully not incredibly sensitive since I have to interact with these items daily. I am now using an antigen for those fabrics on a four day rotation.

Currently I’m lying very low whenever possible. Over the summer I occasionally left the house for chiropractic adjustments and acupuncture, but the drive was 25 minutes one direction and I reacted to the office (as I would to any office).  I’ve since decided that it’s best for me to stay home and minimize reactions. Both types of therapy are something I strongly support, but in my delicate state, I’m not sure if the benefits outweigh the risks. I feel quite stir crazy never going outside, other than to put my child on/off of the school bus, but for now, I know it is the right thing to do. The fewer hits I can take; the better. My husband was kind enough to schedule a friend/family member to make contact with me during each day during December. Most were phone calls and Skypeversations, but I was fortunate enough to have a few in person visits, though they were a little tricky and unconventional (exp. people sitting on the front porch talking to me through the window, or me wearing a paint respirator and conversing with people on the front porch).

One avenue for improvement I’m currently researching is the removal of my amalgam fillings, tooth colored fillings and root canals. In November, my husband and I met with a biological dentist in our area to assess my teeth. This dentist appears to have a reasonably good understanding of people with my condition, as his staff is/are not allowed to wear scented products to work. The office still smelled like a dentist’s office, but I think that’s kind of difficult to avoid. Thankfully he had windows we could actually open. He feels very strongly that patients can be allergic to and/or affected by the types of materials used for their dental care. He offers a blood test to determine material compatibility with each patient. Likewise, Dr. Rea offers individual skin prick tests from a dental panel of various dental materials, both common and uncommon. Dr. Rea and the dentist feel strongly about the removal of amalgam (mercury containing) fillings. During my first visit to Dr. Rea’s office over the summer, I had a blood test to assess certain levels of particular toxins my bloodstream. The mercury levels in my blood were in excess of normal range, yet consistent with what is to be expected for someone with amalgam fillings. The biological dentist actually used a sort of “metal detector” like device on my teeth to determine individual levels for each filled tooth. Apparently tooth colored fillings can also contain aluminum and other metals. All of the levels they found were pretty consistent with what is expected, but one of my amalgam fillings had a mercury level that was about five times as high as they’re used to seeing. I knew the doctor was pretty shocked by it when he asked the dental assistant if she was sure that wasn’t a mistake, to which she replied: “I checked her twice.” I don’t think I need to engage in a long account of why amalgam (mercury) fillings are bad for you. Anyone with chronic medical issues would be wise to research the connection. My mercury fillings will be coming out. The question is: when? I’m not entirely sure where I stand on removing all of the tooth colored fillings. More education and research will be needed.

The biological dentist also strongly recommended the removal of my two root canaled teeth. One of them has been giving me problems for some time and has had two root canals on one tooth. The dentist who originally performed the procedure told me I would probably lose the tooth eventually. The bio dentist reasoning behind removing root canals stems back to research done by a famous dentist from over 100 years ago, Dr. Weston Price.

From the website of Dr. Joseph Mercola:

“Dr. Price was a dentist and researcher who traveled the world to study the teeth, bones, and diets of native populations living without the "benefit" of modern food. Around the year 1900, Price had been treating persistent root canal infections and became suspicious that root-canaled teeth always remained infected, in spite of treatments. Then one day, he recommended to a woman, wheelchair bound for six years, to have her root canal tooth extracted, even though it appeared to be fine.

She agreed, so he extracted her tooth and then implanted it under the skin of a rabbit. The rabbit amazingly developed the same crippling arthritis as the woman and died from the infection 10 days later. But the woman, now free of the toxic tooth, immediately recovered from her arthritis and could now walk without even the assistance of a cane.

Price discovered that it's mechanically impossible to sterilize a root-canaled (e.g. root-filled) tooth.

He then went on to show that many chronic degenerative diseases originate from root-filled teeth.

 . . . Dr. Price went on to write two groundbreaking books in 1922 detailing his research into the link between dental pathology and chronic illness. Unfortunately, his work was deliberately buried for 70 years, until finally one endodontist named George Meinig recognized the importance of Price's work and sought to expose the truth.”

His books are still available today and there is a great deal of information available on the subject, but I think this is sufficient for now. The biological dentist has seen great results with the removal of root canaled teeth, as well as fillings, however not everyone sees results and some are not immediate. The largest concern for someone like me is that the immune system will take a hit, so to speak, from the procedure itself. Doing any kind of dental work is a risky move and would very likely cause me to feel even worse for a while. We are not yet sure my system would be able to handle any kind of change without completely crashing and unfortunately we don’t have many ways to build it back up, such as supplements and nutrients. A telephone consult with Dr. Rea is in the near future. Meanwhile, I’m trying to find out if other environmentally ill people have seen improvement from the removal of fillings and/or root canals. It is certainly a risky move.

2012 has been, without a doubt, the most difficult year of my life. Though I know my anguish pales in comparison to the many afflictions, injustices and great suffering that occur in our world every day. There are millions of people longing for someone to care about them and offer them hope. Though I will admit to feeling quite sorry for myself, questioning my own existence and going into some incredibly dark places, I can at least know I have hope. Why? Because I am a child of God and I am surrounded by flesh and blood “angels” on earth (and probably even some ethereal ones). Through their prayers, words, inspiration, and dedication, they let me know that I can and will survive . . . and one day thrive. God has been so good to our family throughout this illness. My husband and I know, probably now more than ever, that He has never abandoned us and will always come though when we need Him. This is a difficult season to be sure, but there will be brighter days ahead. Welcome, 2013!

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)