When I retired from my career as a speech pathologist in 2017 after working for 27 years with school districts. I had dreams of starting my own private practice working with families who have children with special needs. I was excited to be able to retire relatively young so I could focus on my passion for helping parents of children with challenges.
(Pictures show of when I was living outside unable to live in my own home, and just a small portion of all the furniture and belongings we had to throw out)
But within a year of retiring I began to get very sick and found myself unable to work at all. I had just moved in to a new house 6 months prior to beginning to feel very ill. I felt exactly like I had felt 8 years earlier when I had to take several months off of work. At that time I was told I had an autoimmune condition and there really nothing to be done for it. I worked hard on improving my diet, lifestyle and taking vitamins and was able to go back to work
I learned later that this was an incorrect diagnosis and what I was actually experiencing was mold illness due to working in a water damaged office (the office flooded every year during rainy season) that was exposing me toxin mold everyday.
My symptoms at that time were extreme insomnia (not sleeping more than 2 hours at a time for 6 months, body pain, muscles weakness, extreme fatigue (could not do more than one thing each day and sometimes having to rest for several days from one outing), extreme cognitive problems (could not spell simple words like “the”), mood changes, speech problems, vision problems, balance problems.
When I returned to work I was moved to a different room coincidentally because at that time I still did not know the toxicity of the building was what was making me ill. I gradually got better but never returned to completely healthy. I still did not know what the real problem was but I was feeling better so I was grateful.
Looking back I wonder how much healthier I could be now had I received the correct diagnosis.
When I had a return of the symptoms in 2017, a friend suggested to me that I might have mold illness and that I should have my new house tested. I had never heard of this. There was no visible mold. But I tested the house and it showed the presence of toxic mold. I learned that even if you can’t see it mold can be inside your walls or AC unit and if it’s toxic mold it can make you very, very sick. Why did my doctors not know about this? I found out that there is a ton of research out there but very little awareness! Why do our doctors not know about this? Why does our insurance not cover this? This illness mimics many other illness. I had symptoms of Parkinson’s, Alzheimer’s, depression, anxiety and autoimmunity. It’s not ok that people are given an incorrect diagnosis. There are news stories coming out weekly about people who have been made ill and even died due to mold illness and yet our doctors are still not educated in this. Why?
In order to get better I had to find a doctor who was trained in the Shoemaker protocol of treating mold illness. I was lucky that I could find one close to home. Many people must travel hundreds and even thousands of miles to find a doctor. Chronic Inflammatory Response Syndrome (CIRS) is the name that Dr Shoemaker gave mold illness. Dr Shoemaker is pioneer in the field of diagnosing and treating people with mold illness. The doctor I found trained in treating patients with CIRS charged 500 dollars for an initial evaluation. This did not include blood work. The lab work required to diagnose this illness is available through most labs but in order for insurance to pay for these tests the patient must convince the doctor to order them. That’s because most do not even know about this illness. My specialist wrote a letter to my pcp requesting the lab work and I was able to get he tests covered by insurance. I was lucky I had a specialist and the money to pay for one. I had to quit seeing this doctor after the initial diagnosis because I could not afford to pay his fees. was lucky I had the money for the first visit. Fortunately some of the drugs that treat this illness were covered by insurance but many were not. So again I had to pay as much as 200 dollars for one month supply of 2 medicines. 400 dollars a month for just the basics. I learned it could take a year or more to get better.
One year later I am still recovering. I can’t go in to buildings that have mold in them as my body has become highly sensitized and I will get sick.
In order to live in my home without getting sicker I had to remediate my house which involved removing and replacing all porous materials including furniture and carpet. I can not afford furniture now and have camp chairs and a cot with a mattress for a bed. I had numerous tests done and inspections in order to find the mold at a very high cost. Once the mold was found it needed to be removed and the walls where the dry wall was removed needed to be rebuilt.
This is the only way mold can be remediated Cleaning it or painting over it will not provide a healthy environment the mold will come back.
Currently I continue to pay for many supplements and a doctor out of pocket to get better. Many people take years to get better. In the meantime I am not well enough to work and make money.
The expense of remediating my house, living in a hotel, buying camping equipment (I slept in my backyard in a tent for a while because the house made me so sick). Because people with this illness become so hypersensitive to toxic mold many can not go back to their house even after it is remediated. That is because the toxins have permeated the environment and cannot be washed off. I had to dispose of all my clothes, bedding and furniture. I eventually bought a small camper trailer. The cost of the camper, rent on a rv spot to put the camper, replacing clothes, towels and bedding, doctors, treatment, etc has cost me approx $70,000! I have lost my life savings but I am getting my health back. And I am one of the lucky ones. Why? Because I had the savings to be able to get out of the house and in to a hotel. I had the money to remediate the house and pay for a doctor out of my own pocket.
I know of many people who do not have the money I had and will either be forced to live in a home that is making them sick because they can not afford remediation or they will have to move out and live in a tent or vehicle indefinitely. I was lucky because I had some equity in a home that I owned and could use that money to fix the house.
Many people are renting and have no choice but to break a lease, loose the money and ruin their credit in the process because they or their children are literally dying. As they seek a new place to live often these people have to break more leases at a huge expense because there are so many buildings that have toxic mold in them. Research has shown that more than half of all buildings have had water damage. Once made ill by mold people become hyper sensitive and can not be around even small amounts. Landlords often don’t fix the problem correctly (awareness of proper remediation is also lacking) and demand that the tenant honor the lease. After attempting to find a new safe home several times many people simply run out of money and end up homeless and sick.
I was lucky and had some money that helped me survive. I pray for my fellow “moldies” everyday!