I have always been a fairly introverted person, never one to push my views on anybody or to state my opinion as fact. But I would quietly disagree with certain perspectives or think to myself that certain strategies were over-the-top or just plain ridiculous.
Over time, my views about diet and food have certainly changed. I had horrible cystic acne as a teen and young adult but I felt like I was healthy because I was a very fit athlete. I could eat whatever I wanted and stay fit. I probably was more likely to eat the non-fat yet sugary foods. Now it is my perspective that the sugars and artificial ingredients in many of the foods I ate contributed to my acne problem (and they have likely at least contributed to my current health problems). I ended up taking antibiotics for a while to reduce the acne but, even these days at age 39, if I eat poorly I will get a little break-out. Over time, the small health problems kind of added up. In college, I was diagnosed with iron-deficiency anemia. As a newlywed in graduate school, although I was still really fit, I had gallstones and went through surgery to remove my gallbladder. Then, after giving birth to my two kids, I was diagnosed with Hashimoto’s Thyroiditis, which is autoimmune hypothyroidism. Now, I really have to make certain choices when it comes to the food I eat. I’m not the best at it but I try.
So, while I have (most of my life) felt fairly healthy, I still had these little health incidents going on that were likely pointing to a bigger problem. My doctor would not test me for the antibodies related to Hashimoto’s even though I asked him on at least three occasions, my identical twin sister had been diagnosed with it, and my TSH was slightly elevated. He told me it was more-likely lab error or related to my non-allergic rhinitis, allergies (which I was never known to have), or just being a busy mom of two young children while working full time. He even added “Chronic Fatigue Syndrome” to my file without mentioning that to me at all. (Unfortunately, CFS has long been associated with being more of a mental health issue but I think research is disproving that). I finally had the nurse practitioner test me and I was positive (had elevated antibodies), which indicated Hashimoto’s Thyroiditis. I changed doctors right away and asked my new doctor if she could help me. The first question is always, “are you depressed?” Sure, it may look that way when you’re feeling like crap, nobody believes you, your doctor won’t test you, and you can’t hold back tears when you ask the new doctor if she can do something about it! I was not bedridden and I did not look unhealthy but I was overly exhausted and I could no longer identify with the tired, cranky person I was becoming. Why would we not be proactive in making sure that my problems didn’t get worse?? I think that’s part of the problem with the medical system today. That experience was a bit of a foreshadowing of what I would go through with my daughter, but fighting for my daughter has been even more difficult.
Before my thyroid issues and my daughter’s illnesses, I had blind faith in mainstream medicine. I did not question the insurance companies, pharmaceutical companies or medical groups and their tendencies to be profit-driven businesses. It did not concern me and was not even a thought in my mind. I know there are many fabulous doctors and healthcare providers out there and they are probably fairly limited in who they work for and how they must do business as directed by the insurance companies. It doesn’t seem right but I suppose that’s just the way it is. At least I know I can choose to go a different route when it comes to who is providing the care, especially when specialized care is needed. I don’t know why–maybe it’s just naivete–but I initially did not know I could go to a different ER to get a second opinion and I didn’t realize I could search out a healthcare provider out-of-network and pay out-of-pocket. I wish the policies were different, but paying out-of-pocket (and going into more and more credit card debt) to receive specialized care for my daughter has made all the difference and it has definitely been the right choice for us. I trust a lot more now in functional medicine, integrative medicine, and holistic medicine and I do not scoff at alternative strategies and remedies like I may have in the past. I do my research of course and I don’t believe everything I read on the internet but I am also more open-minded.
I just have to accept that not everybody else will have this perspective. My life experience thus far has brought me to my current way of thinking and everybody’s life experience is different so we will always have the “Pro-Vaxxers vs Anti-Vaxxers” (another plight for which I have become more sensitive and open-minded), the “Lymies” and the “Pandas” vs the deniers. If we had not gone through this, I might be on the other side of argument or, at the least, skeptical.
I think the phrase that I’ve seen about Lyme disease sums it up perfectly: “You won’t get it till you get it.”
This brings me to our current predicament. My daughter’s specialist had requested for months that we test our house for mold. There was a mail-order test that would cost a few hundred dollars but, between my husband discouraging me and going further into debt, I kept putting it off. Plus I was just kind of in denial even though we had a previous leak from the master bath into the kitchen ceiling and cupboards, our dishwasher leaked and lifted the wood floors, and we have four dogs so there are a few areas that have been slightly affected by repeated dog pee. My husband fixed the leak, we aired out the wood floors, and we always clean up after the dogs but nothing was ever fully inspected or fixed. So, my daughter’s specialist decided to order some blood work to determine if she might have been exposed. The reason for testing is that my daughter did test positive for MARCoNS, she becomes congested with post-nasal drip fairly frequently, has frequent bloody noses, and she still has some lingering symptoms after being on treatment for nearly 8 months. My son (without PANDAS and Lyme) also has frequent bloody noses and, for about two years, he has been having periodic severe pain in his eye(s) accompanied by nausea and vomiting (which we are beginning to suspect are migraines). He also has a history of asthmatic bronchitis, RSV, and hay fever (which he had before we moved into this house). I would never naturally think to myself that these issues could be related to or exacerbated by mold. My daughter’s test results came back and she has elevated IgG levels to Stachybotrys (aka the nefarious black mold), plus moderate IgE levels to Cladosporium, which indicates an allergy response to that specific mold. These are important because, for a person suffering from immune issues (such as Lyme and PANDAS and even asthma and allergies), mold can make matters worse and impede the healing process.
We own our home and we would like to stay here so our options are to test the house, have it remediated, and replace the damaged areas (otherwise sell the house, but having to disclose that we might have a mold problem). Depending on the damage, it can cost thousands to remediate and tens of thousands to replace everything. I have even heard from others that they walked away from their homes and any porous contents (e.g. clothing, books, mattresses, furniture) entirely. If that’s not enough to stress people out (on top of all the other crap), I don’t know what is! Seeing as we are already in debt, we had to delay the mold inspection because he only takes cash (we are opting for the entire house inspection with indoor/outdoor air quality inspection as well for $500.00). That will be done in a couple of weeks. We drive up north to see my daughter’s specialist next week. Then we will talk about refinancing the house (we are lucky to have a decent amount of equity) but with our credit card debt I’m not sure how optimal our credit will be. I just hope we can pull it all off and stay in our home!
For more information on mold, there is a free documentary at moldymovie.com.
I just feel like it never ends and it does stress me out and depress me but life goes on. We are lucky to be at the point in which we know what’s going on and now we just have to get to work on fixing it! After all, health is the greatest gift we can ask for.