I remember waking up every morning for approximately 2 months, with my first thought being, "Please let that have just been a bad nightmare." But then I would feel the symptoms immediately, numbness, brain fog, electrical zaps, extreme fatigue, blurry vision, and I would realize just like my cancer diagnosis, "This is my life, it was not a nightmare."
I would then take a few deep breaths to release and "make" myself ok as mothers do so I could take care of Nate and Lillian and get through the day and find joy amongst the craziness that was happening in my body. My morning mantra was and still is, "I am healthy, I am happy, I am free."
How did this start? In March we started a bathroom renovation due to a leaky shower. We decided to redo the bathroom and I was as careful as I knew how. I researched, made sure products were not off-gassing as they went in. I smelled tile, grout, the insulated tub, vanity, and I thought I was careful, but I made a big mistake not realizing how sensitive my system was. What did me in was the silicone caulk used to adhere the glass on the frameless shower doors. It contains VOC's and anti mildew agents. I spoke with the company and they assured me smell would be gone in 1 day and was the lowest VOC product on the market. However turns out none of that was correct, so I chalked it up to another learning experience.
As I type this it is 9 months later and I still can't get into the space of our master bedroom and bath. Turns out it contaminated the entire space for me and any steps we have taken have not been enough to let me back in the space. So we are hoping that more time will make it ok. In the meantime we converted the playroom to our bedroom and although inconvenient, we are making it work and we are waking up to the beautiful sunlit trees. We have a safe house for me otherwise, we have our family, and I can cook in my kitchen :) So we are rolling with it all best as we can, of course some days better than others, but it's a journey right?
Second event was the completion of our screened in porch. We already couldn't be in our bedroom and I suggested we wait to do the porch because at this point I was very nervous about any other additions. But against my better judgement I ok'd the porch. I was again careful making sure to use non toxic paints and stain, and flooring that did not off gas. However I had a very large slip in judgement that I didn't realize. The wood used was saturated in chemicals to make it withstand the elements (so crazy I didn't realize that in hindsight.) The day the porch was done, I literally had to flee my house. It was off-gassing into our home and I was vomiting for hours locked in the upstairs bathroom, the one safe room left for me. It was the last day of school for the kids. Luckily my sister swept in, helped get the kids settled as I proceeded to vomit outside the front of my house. A good friend was traveling and we found a safe haven at her house in the neighborhood. I knew about people with severe MCS and I knew too much about what the road ahead could look like. I literally thought I was dying. I was lucky my sister was there reminding me I would be ok, I just needed time to detox the chemicals. And then came that life lesson again, one day at a time.
As I escaped my house, we were fortunate enough to have 2 safe houses locally for me to escape to with the kids. I began to take one day at a time, tried to get them to swim, kept them entertained and began to treat it like an adventure. I would say things like, "It's not every day you get to play with your best friend's toys without them being home" while wondering if I would ever be able to live in our home again. Our "adventure" took us up to NJ and NYC to see family and friends and I coped the best I could. Truth is I don't feel great in most other people's homes, but the kids were great and although I didn't know what tomorrow would bring, I knew I would be o.k. I had to be, in my mind I didn't have a choice.
As we took it day by day, I recovered from the assault on my body and immune system. I have bad moments, bad days when I am exposed to various chemicals, but also many great days. I now have more good days than bad and try my best to avoid stores, school, and other homes that make me ill. I can walk into a home and know immediately if they use chemicals in cleaning products or if has off-gassing furniture. This is not a skill I want and I try to tune it out as best as I can. It is difficult to disengage from what is happening in my body after being forced to be so in tune after my cancer diagnosis. Especially since it feels so terrible.
Being mold and chemically sensitive is very difficult in today's world. Although my body has recovered I am still considered to be severely sensitive to mold and chemicals. I react to almost everything. Stores are very difficult for me so I try to do mostly online shopping. My clothes are organic cotton and new items must be washed at least 10 times and soaked in vinegar and dish soap. This is my life. Not the life I imagined, but I am alive. A great lesson from being a breast cancer survivor is that each day matters. My daily life consists of avoiding toxins, being outside as much as possible, cooking nourishing foods, researching and connecting with other like minded people. I am on a quest to help diminish my symptoms to make life easier for my family and I.
This morning the song, "Home is wherever I'm with you" came on our playlist. It is true, home for me is whenever I am with Jay, Nate and Lillian. I may be mold and chemically sensitive, and yes our world has gotten a little smaller as there are limits where I can go, but I feel grateful for each day. And yes there are positive things that have come out of this situation. My children will be healthier. I can help share information with others. I have great empathy for anyone dealing with chronic illness. My marriage is stronger than ever and I try to make the most of each day. When I feel good I feel great and relish in it because I know that tomorrow may be different. Life is messy. Control of most things is an illusion as things can change in the blink of an eye, so I focus on what I can, finding joy today. Here is to enjoying the messy, beautiful, heartbreaking, joyous journey of life!