Big Problems and Slow Solutions / Rants and Silver Linings

Tilted Mom’s Backstory

The story of how I ended up here...

The story of how I ended up here…

Where to begin?

If, like me, you know that MCS is usually the result of genetic predisposition combined with environmental exposure, then you might want me to go way back and do family history. But I am trying to blog, not write a dissertation here. So let’s skip ahead with only a brief nod to the strong history of auto-immune disorders within my immediate family; food and inhaled allergies, asthma, rheumatoid arthritis, and Asperger’s.

I was a graduate student in the early 1990s working on an advanced degree in Materials Science. In my case, this meant taking a lot of physics classes and working full time in a lab attempting to grow thin film semiconductors that might have useful properties for NASA, who funded my research. I spent a lot of time cleaning things with very strong solvents and experimenting with different organo-metallic gases as they reacted in vacuum chambers. In short, I inhaled some nasty stuff. Mind you, there were safety measures in place and most of the time I followed them. But apparently, that was not enough for my immune system. Because I ended up a very sick scientist.

Like many fellow MCS patients, diagnosis was long and complicated and messy. I was sick for a long time before I had a word for it and even longer before I knew what to do about it. For a long time, I just thought I was going crazy. Literally – crazy. I would get lost on the 5 minute drive from home to lab. I would stand in grocery stores overwhelmed by the many choices. I would study for an exam and not be able to retrieve any of the information the next day. I told nobody about these incidents; they were both scary and embarrassing. But it became obvious my health was deteriorating as the frequency of intestinal infections rose and my headaches turned to migraines. I became unable to study or work and had to take a leave of absence.

Then came the rounds of doctors as I stayed with different family members. Some physicians were genuinely concerned but baffled, others were cursory and dismissive. But my family was extraordinary and because of that time in my life I will never take them for granted. They never doubted me and when I started to believe one doctor’s label of Somatoform Disorder, my family continued to insist that this sick version of me was not the real me. They kept me both sane and hopeful.

In the end, it was my scientific background that brought a diagnosis, not a doctor. One day when I was feeling better than usual, I got into a car where somebody was reading a freshly printed newspaper and immediately was overcome with symptoms – cognitive dysfunction, heart palpitations, and nausea. I stepped out of the car and felt better. I got back in and felt awful. I still thought I was crazy but I turned one of my old lab notebooks into a study on myself. I had never heard of a health journal much less Multiple Chemical Sensitivity but I kept track of what triggered the symptoms and realized I was reacting to a variety of chemicals. in 1995, My mother actually researched it for me and brought me a two paragraph blurb about MCS in a journal. And we both went “A-hah!”

So armed with a plan of avoidance, because in 1995 there was little else, I got out of my graduate program with a Masters of Science and tried to build a life without chemicals as my career. It worked for a few years but everyday low-level chemical exposure became increasingly problematic. And a second even worse health crisis came to a head in 1999; by then I had chronic pain, spreading food allergies, and an oxygen tank that accompanied me most places. Obviously, I wasn’t maintaining a full time job. But for some unfathomable reason, a wonderful man still married me during this time period.

Lab work wherein I literally went off the chart.

Lab work wherein I literally went off the chart.

Dr. Pittman of the Carolina Center in Raleigh, North Carolina was the first physician to help me start steering through the maze of chronic illness. Despite years of telling doctors about the metallic taste in my mouth, nobody had ever done heavy metal testing. Duh. So we did that and yes, I had a fine case of mercury toxicity. Literally off the chart- see the mercury number is too big to fit in the given scale. I enjoyed a brief time of notoriety, as a variety of toxicity experts tried to determine how I got that much mercury in me without a single incident exposure. They never figured it out. And I didn’t actually enjoy the notoriety.

In the spring of 1999 I spent a week at Dr. Lieberman’s clinic in South Carolina. MCS clinics, like COEM and EHCD, cannot guarantee a cure of MCS but they are invaluable for the new MCS patient. The full scope of how to achieve avoidance is overwhelming, but if you see it and hear it for a week you start to get it. Additionally, this illness is incredibly isolating and spending a week with other patients lessens that sense of being marginalized.

Under the care of Dr Pittman and Dr Lieberman I did chelation therapy, IV then oral, for one and a half years. I was very sick during that time. I was still in a lot of pain, allergic to every food, and attached to my trusty oxygen tank. I lost more weight than my frame should and stopped menstruating for a year. I was usually too exhausted and foggy brained to be scared. On the occasional clear headed day, I was terrified. I used my sauna, ate what I could, and tried to understand this illness by reading everything I could. In a reading box because I was reacting to paper and ink.

As I wound down chelation therapy, my husband and I made the bold decision to move. The ozone action days in Raleigh were awful for me and we both had always talked about retiring to the beach. Why wait? A few months after we started dating and a few years before I got sick, Dave was diagnosed with stage 4 non-Hodgkins lymphoma. Yep, the man beat cancer and still married a sick woman. So as we approached thirty, we had already had our mid-life crises thanks to serious health scares for each of us. Our priorities were very clear. We wanted to do the “someday” stuff today.

See the path to health with the rainbow at the end?!  That's my backyard.

See the path to health with the rainbow at the end?! That’s my backyard.

In 2000 we moved to Anna Maria, a small barrier island south of Tampa Bay. We got a house on the bay side and I enjoyed (no sarcasm this time) the most healing phase of my life. I swam and sailed and walked outside every day, breathing in clean ocean breezes. I ate healthy food and slept in a home we made chemically safe for me. About a year later when we did some follow up lab work, I was free of toxicity issues. I was also free of chronic pain, though the chemical sensitivities were still with me. And so we started a family.

My head was clear enough to be terrified all the time for this process. What if I passed along some serious auto-immune issues? How could I take care of my children as they got old enough to be away from the safety of our home? I was right to be concerned; these issues and more have been a constant struggle for our family. Insert all the clichés you have heard about how having children is world changing but worth it here and know that I agree. The struggle is always outweighed by the sheer joy of having temporary guardianship of two fantastic human beings. The mom guilt is another thing. My son, born in 2002, has had minimal health issues but my daughter, born in 2004, was born with severe food allergies. She was also 6 weeks premature so for the first few years of her life, we dealt with twitchy lungs. Now, at 8 years old, her lungs are fine, but one eye is lazy, she lisps a bit, and her food sensitivities have spread. She is almost as food limited as I am. GUILT.

While my children were infants, all I had to worry about was what health issues I might have passed along. But as they grew older and needed to go out into the world more, I had to find solutions that enabled them to do just that without me. Those solutions only got us so far. There were playdates, school functions, art projects, Disney movies, and traveling to see family. I was so much more aware of the MCS limits as my children grew older. At the same time, I realized it had been quite a few years since I had checked into the latest research on MCS. When I moved to Florida, I was so burned out on doctors and then so blissfully happy to have my children, that I had become complacent with the limitations brought on by MCS. So I started reading again and there had been some developments that sounded promising.

My nebulizer in action.  Note the missing lid and cracked body - it's a frequently used nebulizer.

My nebulizer in action. Note the missing lid and cracked body – it’s a frequently used nebulizer.

In 2009, I started working with Dr Grace Ziem and using her Neural Sensitization Protocol. I cannot say enough good things about Dr Ziem. She is knowledgable and passionate about continuing to educate herself. She is patient with her patients; her appointments last hours. And her protocol has helped me tremendously. Between 2010 and 2012 I built up enough chemical tolerance that my life started to resemble a normal one. I was still a stay at home mom but I was able to volunteer in my kids’ classrooms, chair the town’s environmental committee, write for HEAL magazine, build an Odyssey of the Mind program at our elementary school, and go on some family vacations. In fact, in the spring of 2012 I was doing so well that I began the process of becoming certified to teach in the state of FL. I wasn’t sure that I could handle full time work, but I knew they needed science teachers badly enough that I might be able to find a part time position or work for Florida Virtual teaching online courses. I was so excited to feel useful that I ignored multiple warning signs that i was doing too much too fast.

The summer of 2012 I got even more carried away with the freedom of travel and left my safe home for too long. In short, I took for granted my expanded chemically tolerant life, and over did things. By September of 2012, some mysterious systemic inflammation had set up permanent camp throughout my body, leaving open sores all over my scalp, inflamed painful joints, spreading food sensitivities again, and what the specialist called “a chemical burn” on my corneas. I oozed and swelled and went functionally blind for a month. And after a few months of struggling with the loss of all my hard won progress, I slowly started all over again.

My Heavenly Heat sauna.  I'm back in here a lot.

My Heavenly Heat sauna. I’m back in here a lot.

So now I eat well, exercise often, sauna frequently, stick to my doctor’s protocol, and choose my exposures carefully. I blog about my struggles and small victories and hope that I am connecting in some way with the larger world despite my closely defined physical parameters. I am always trying to find some balance in this tilted life.

2 thoughts on “Tilted Mom’s Backstory

  1. I love you and you are one super duper person. The great thing is the love of a tremendous husband and the family that offered guidance and support. This is a great resource. You are a wonderful family 😉

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