Since I started this blog I have shared a lot of our experiences navigating the path of screening and diagnosis of metabolic disorders, specifically mitochondrial disease for our daughter~ Lady A.
One part of the story that I have not shared yet, is my own. As much as I like to stay out of the lime light and be a behind the scenes kinda gal, I think, for others on a similar journey, it is important to honor where you have come from to help you get where you are going! So here goes…
As a child I was a pretty healthy kid, never hospitalized until I gave birth to my son, never a broken bone. I had the chicken pox and survived, and a few other little “hiccups” along the way, but nothing ever too major, in my recollection (or my parents recollection for that matter!). I do have a distinct memory though of having nose bleeds somewhere between 1st-3rd grade, nosebleed so bad that we had to go to the doctor to try to stop them. At that time, I remember (not sure why I remember, since my parents don’t) the doctor saying, “She is allergic to aspirin and you should never give it to her again.” You see, this was in the early 80’s, and in those days (gosh, I sound sooo old!) St. Joseph’s Chewable Aspirin was on the market and marketed to CHILDREN (the little orange chewable tablet). The 80’s was also the time when Reye’s syndrome was being reported at all time high’s, eventually leading to the warning label placed on ALL ASPIRIN products today stating NO ONE UNDER 19 years of age should take ASPIRIN (Salicylate). So taking the doctor’s advice to stop the medicine worked, no more nosebleeds.
Fast forward through college as a chemistry major and co-ops at polymer plants and pharmaceutical companies, to my final internship prior to going to graduate school. I was working at the R&D facility for a large paint and glass manufacturer in Pennsylvania. After a few months in the lab, I took a trip west to go visit graduate schools and visit my then boyfriend, now husband. We ate out at a Thai restaurant in trendy Santa Monica and I tried a fancy curry dish. In the middle of the night I woke up urinating blood. Went to the ER and was told I had a UTI and to go home and take some antibiotics. I followed Dr. orders and the symptoms went away, or so I thought.
After returning to the lab, I began to have times of heart palpitations and times when I felt as if I was going to faint in the lab, I had heaviness in my chest, a feeling of my throat being sore and constricted at times. I was seen by the company doctor and sent home a number of times. After a a trip to our family doctor and a few days of rest, I would return to my internship feeling much better (for a few days). And then the symptoms would return and after a few cycles of this, worsen to include cardiac, respiratory, and GI issues. I began being referred to specialist after specialist from GI doctors to cardiologists, from allergists to multiple internists, each finding NOTHING WRONG and referring me on to the next specialist. When no one could find anything physically wrong, one doctor suggested it was psychiatric. To appease their suspicion, I saw the psychiatrist, who told me there was no need for her to see me for a follow-up, since I seemed like a “well-adjusted” young woman, ready to go to graduate school, not someone with a psychiatric illness.
By this time, my internship was coming to an end, and though I had missed many days of work due to these intermittent symptoms, I had managed to complete the project that I was given. On my last week on the job, I sat in a meeting with a manager from one of the plants whose project I was working on. He thanked me for my research and said that I had really helped them out, because, “so many workers were getting SICK with one of the raw materials” they were using in the plant, and now my research project would allow them to “change to a new raw material that was safer”. My jaw dropped and I asked, “What type of sickness are the workers getting?” He told me that many of the workers were suffering from respiratory, cardiac and gastrointestinal symptoms, IDENTICAL to the ones I was experiencing in the lab. As I attempted to raise concern with my supervisor and human resources, my term had come to an end, and little discussion from the company was maintained.
In the meantime, my parents took me to a toxicologist, who saw us nearly 2 weeks after my internship ended, but who confirmed based on the chemicals I was working with, that all the symptoms I was experiencing could be caused by the exposure I was having. He also explained unfortunately though that doing any blood work or testing would not yield any answers, as too much time had elapsed from my last exposure and thus the chemicals would no longer be in my blood stream. He advised me to avoid SULFUR containing medications in the future and said that most likely I was sensitized to the chemical sulphur and may need to avoid it from then on. Not exactly the words you want to hear as you are embarking on you way across the country to attend grad school and pursue your PhD in chemistry!
But away I went across the country, to graduate school for chemistry and tried my hardest to “get back into the lab” and begin my new research endeavors. After a year of trying… and not making much headway overcoming my chemical sensitivity and general ill feeling after being in the lab, I made the very difficult decision to finish my Masters degree in Chemistry (versus the PhD I had embarked on) and leave graduate school and the lab.
Leaving the lab in 1999, has turned out to be one of the biggest life-saving decisions in my life. I regained my health, I found a job working with people and still using my chemistry degree (aka. scientific recruiter), and little did I know then, but the lessons I learned through these “life experiences” would be crucial (fast-forward 10 years) for unraveling my daughter’s health “mysteries”.
God’s plan is a complicated one, and one that never really makes sense (to me at least) while I am “in the moment”. They say, “Hindsight is 20/20”, I say “God’s sight is 20/20” it just takes us moving past the moment, and pausing long enough to reflect on the moment, to actually SEE that His vision is perfect, and always has been.