If Only There Were Ashes

The Danger Within

This house was my home. Five years ago, I loved this house back to life from a state of disrepair. I painted and stripped and mended and patched. This house became something beautiful. Something cherished. Something loved. I brought my baby home to this house. We soaked up the summer sun in our garden and sat by the fire on cold winter nights. I love this house and the memories we made there. But this house was hiding something dangerous within. This house was not the protective shelter we thought it to be. If only there were ashes.

How We Found the Problem

It’s been five weeks now since sewage began pouring through our downstairs hallway ceiling from an upstairs bathroom. It took a few days to diagnose the issue, but it was finally discovered that a descending pipe from the upstairs toilet was connected to the descending main stack by a horizontal pipe that was pitched incorrectly. So rather than sewage running down the pipe into the main stack, it was backing up and sitting in the horizontal pipe. When it became too full, the sewage was then seeping up and spilling over the phalange of the toilet into our hallway ceiling. As we had a similar plumbing issue last year (with a different diagnosis and repair), it is assumed that the issue has been going on for at least a year, if not more. Sewage. Slow leak. Plaster ceiling. That means mold. Toxic mold.

Why It Made Sense

While this revelation came as a shock to us, it also confirmed a suspicion I had already begun to wrestle with. Throughout all of my deteriorating health events over the past two years (see My Story), I have constantly been searching and testing for the driving factor of my inflammation. After systematically ticking off the list of possibilities, mold toxicity and heavy metal toxicity were my two remaining contenders. As horrifying and disturbing as this was, it made sense.

Stepping Into the Unknown

We moved out of our home on Easter Sunday. We spent two nights in a hotel before learning that our insurance would not cover displacement costs due to mold. After that, we moved in with a gracious family from our church who kept us for just over a week. When some financing became available to us, we spent two more nights in a hotel before relocating to a furnished apartment. That is where we remain today.

Before moving to the apartment, we had both air sampling and an ERMI (Environmental Relative Moldiness Index) done on our home. The air sampling came back positive for Penicillium Aspergillus within the cavity of the ceiling, but reported that the air in the hallway was cleaner than the air outside the home. While these results are important in interpreting the whole picture, one also has to understand the limitations of air sampling. When dealing with toxic sporing mold, it is not the mold itself that causes an allergy, an infection, or an immune reaction. It is the mycotoxins produced by the mold. The spores. Many of these spores are considered heavy, meaning they do not stay in the air for long periods of time, thus air sampling cannot detect them. Here enters the ERMI.

The ERMI

The ERMI is a test run by collecting dust samples on a sterile swiffer, which is then mailed to a lab where DNA testing is done on the dust to break down the sample by 36 different types of mold. There is even a specific spore count given for each type to reveal the level of toxicity. There is an overall ERMI score that reflects the toxicity of the environment, and that score is also used to create a HERTSMI2 score, which reveals how toxic the environment would be to someone who has the genetic susceptibility to mold illness.

We got our ERMI results the night before we moved into the apartment. I was lying in bed when I opened the file. On a relative moldiness index scale of -10 to 20, our house was a 19.7. It wasn’t just Penicillium Aspergillus as the air sampling suggested. And it was definitely not contained to the ceiling cavity. All of the biggest, scariest, mycotoxin producing molds were present in our home. Chaetomium. Stachybotrys. Trichoderma. Wallemia. The HERTSMI2 score of our home was a 24. For someone with the genetic susceptibility to mold illness, the home must be below a 10 to incur no reaction.

Starting Over

These results were devastating. I had already been doing my research. I knew what this would mean. These big, bad, toxic sporing molds cannot safely be removed from porous contents if someone has been made ill from the mycotoxins. Porous contents include textiles, wood, and plastic. When we woke up the next morning, we took everything we had brought from the house back to the house and shoved it through the front door. We had to start over.

I quickly bought everyone one pair of clothes, one pair of shoes, and one pair of pajamas. We discarded our old clothes before entering the new apartment. The next day, I set out to create a small capsule wardrobe for everyone in the family. I also bought a few toys as my son could not bring any with him from the home. Thank God for Dave Ramsey’s Financial Peace University. We had an emergency fund to cover these expenses.

Weighing the Numbers

Now all of this may sound extreme, but it all comes down to numbers. We have to weigh the numbers from the mold testing with the numbers from my genetic testing and other blood work. We still don’t have the medical testing back yet, but are currently operating as though it will come back positive. All of my symptoms line up with those of CIRS (Chronic Inflammatory Response Syndrome), which is a deterioration of the immune system brought on by exposure to bio-toxins. Should my blood work come back negative for CIRS and negative for bio-toxin exposure, we may be able to consider removing contents from the home and reincorporating them into our lives. It’s a waiting game right now.

Waiting

As we wait, we are trying to consider our long term future. We will not go back into the home, even after remediation. We’ll likely rent for a while. We are trying to mentally and financially prepare for the likelihood that we will have to replace everything we own. Everything. Every mattress, couch, towel, book, electronic. We may lose every cherished piece of childhood, every family quilt, every letter tucked neatly away in a box. The effects to our life equal that of a fire, yet there are no ashes. No insurance check to cover the damages. We will have to see everything we own thrown into a dumpster.

And while we consider these possibilities, we are also thinking about the health ramifications this exposure may have had on our entire family. In this world, everyone’s body is exposed to toxins. You can think of that exposure like a bucket. As you are exposed to more and more toxins, the bucket fills up. If your body is able to detox appropriately, the bucket will empty from the bottom even as more toxins fill the top. If someone has the HLA DR genetic susceptibility to mold illness, the bucket does not empty properly from the bottom. More and more toxins build up until the bucket is overflowing resulting in immune disfunction. We know that I am sick. We have not seen drastic immune responses from my husband and son, but that doesn’t mean that their buckets aren’t 75% full. Time (and expensive medical testing) will tell the story.

Finding a New Normal

It is said that when you have been medically affected by mold and are removed from the environment, your sensitivity to mold increases, so much so that you can smell what you could not smell before. It is referred to as being “unmasked.” I can attest to this. Both my sensitivity to mold and my sensitivity to other chemicals have drastically increased and seemingly continue to do so. This is where things get tricky.

As people learn of our story, many so generously want to share with us old clothes and books and stuffed animals and toys. I know that comes from love and a deep desire to help us out of this awkward situation. At this time, though, we cannot accept used items. I’ve tried and had to discard them. I’ve even had to return a new item to a store because of the smell. There will be no more thrift shopping in my future. No more online swap sites. I hope that our dear friends can understand this odd circumstance and not think us stuck up or picky. It is the current state we are in as we try to move forward with improved health.

If you’ve read this far, thank you! I’ll continue to update regarding our situation as more details arise. Please continue to lift us up in prayer. I trust that God has a plan for our family. We have not been abandoned or forsaken. We’re just feeling a bit lost in the muddle of the unknown, and wishing for a sense of finality. If only there were ashes, we could move on.