Once upon a time there was a woman and she got pregnant. It was me. In this story I am a panda.
It was 2010. I was 28 and fiercely excited to be expecting. I felt good, although I was strangely itchy around the ears.
Sorry to drop a bomb on you, but I miscarried - and then again with the next pregnancy. That's all another story, but I will say this about it: the story is uniquely mine, just as all those stories are. And so it's also the same story. I know that's confusing and weird. It's just one of those situations in life that is personal and universal all at once. Much like birth, ironically. It is, and I say this without hyperbole, devastating. Unbelievable. Physically and emotionally scarring.
But there is good news, too. I had a third pregnancy and we were lucky to have a healthy baby the next summer. I wrote more about it
here if you're so inclined, but that's really not what this story is about.
Itching. While the pregnancies and job changes and life in general just kept on keeping on, I was still itching and the location had spread - rather quickly - from just around my ears to my right thumb, and then eventually to include:
When we went to the cabin the summer before August was born I vividly remember stepping out of Joyne's Ben Franklin in Grand Marais, MN and walking toward the White Pine gift shop across the street with one thought on repeat:
[Do NOT start itching your boobs in public. Do NOT start itching your ...]
It. Was. Torture.
And so came Realization Number One: something was not right.
I had just sort of assumed it would eventually go away, like childhood eczema. And then it didn't go away but I was like
ugh, I don't want to go to the doctor. Who would I see? Primary? Dermatologist? Allergist? Do I need a referral? It might be gone by the time I get in to see someone anyway. I'm exhausted just thinking about it.
And so months went by and I ended up sleeping with ice packs and only finding relief for the sweet, sweet five minutes after bathing. Fresh and clean ... until the spark was there again, deep underneath. The spark would grow into a burn and eventually I'd be trying to scratch an itch that was so far under my skin I could feel it in my bones. That sounds like an exaggeration, but it's really not. The expression "toe-curling" is applicable, in a bad way. And while I could sometimes, thankfully, grit my teeth and
not itch my boobs in public, the eczema on my hands and elbows was becoming embarrassingly visible and harder to hide.
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| Sad, sad panda-me. |
I was not totally unaware. We'd come across a laundry detergent once that caused my hubs to break out, so I knew it was probably something I was touching or that was touching me. Which is great, except it's hard to psychically tell this to people who see your splotchy, flaky, cracked hands and probably think you have a communicable disease.
Also, it's not that great because knowing it's
something doesn't really help you much at all. Of course it's
something. But
WHAT IS IT?
Imagine you have to make a list of everything you touch over, let's say, one week. In addition to all the products you use on your body and in your home, there's the stuff you use everywhere else too. Public bathrooms, friends' houses, work/school. And not just the stuff you apply to yourself or otherwise actively make use of - think of the furniture you sit on, the clothes you wear, the food you eat, those five vases you handled at that one store. The scents of a thousand perfumes and candles that you or your loved ones or your favorite stores use.
And so came Realization Number Two: I. Am. Screwed.
And yet it was clear that the list was the key. Only my list needed to encompass much more than one week's worth of data, and testing all of it was simply not manageable. I needed help. I started calling doctors to find out exactly who could help me, and by and large they were all pretty much stumped. And I was miserable - trapped in a body that apparently hated me, and in a world that was in cahoots with it.
I'm guessing anyone with any chronic illness can relate to the feeling of being vaguely insane. Like most of the time you're able to go about life as if you're ok, but you're actually on the verge of slapping the next person who asks you to do something your disease prohibits, then enlightening them with a hysterical analysis of all your symptoms, the medical and insurance systems, and what it means to be "normal" in a wider social context.
Between the actual symptoms and the mental stress of accepting a possible fate wherein I would spend the majority of my life living in a plastic bubble, I was feeling vaguely to moderately insane. But then, somehow, by the good grace of the heavens and whomever rules them, I stumbled upon a bit of info about something called a patch test and I was suddenly like
WHY DIDN'T ANYONE KNOW ABOUT THIS! I mean, a few people knew, obviously.
Enter the superheros of my world, complete with eyedroppers and lab capes (coats):
Here is what I learned:
A patch test is what you do when you are so desperate to find out what you're allergic to that you purposely put little dollops of allergens all over your skin and hope you react to some of them so that a supervising doctor can identify the villains. Each patch is a little ring that contains a particular substance, and these patches are then taped to you, mostly on the back. It takes five days. The patches are on for the first 48 hours, during which you cannot shower and
you can't scratch (!) because doing so might create false results. There is a lot of pacing and a lot of ice packs during this time. The patches come off for the first reading of reactions on the third day, but since contact dermatitis is a son of a bitch and reactions sometimes don't appear for a day or two after the exposure and can last for WEEKS afterward, the final reading isn't done until the fifth day.
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| A very accurate representation of patch application. Sometimes they also put patches on your thighs. Not an accurate representation of range-of-motion, as you can not raise your arm above shoulder level because of the tape. Getting dressed is difficult. |
There are standard patches and patches they make from all the stuff you use at home. They test surfactants, dyes, preservatives, woods, metals, fragrances, etc, etc, etc. Between all of them, chances are they'll find out what you're allergic to, as they did for me.
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| Say it with me: methyldibromo glutaronitrile. |
It was mostly a huge relief. I left the clinic jubilant and on a mission. I threw away all the bottles of stuff I had been putting on myself not knowing that it was toxic to me. I went shopping that night for new stuff. I cleansed my world of the bad guys as much as I could.
As much as I could? you say?
Why would you continue to put that crap on yourself? you ask? Because there will always be bad guys in the world. And so came Realization Number Three: knowledge actually
is power.
CAMP /kamp/ verb:
1. To sleep in a tent.
2. To highlight the absurdity of certain cultural notions - often gender or beauty - through exaggerated or ironic performance.
CAMP /kamp/ noun:
1. A fun place.
2. A group of people with a common ideology.
3. A Contact Allergen Management Plan.
The
American Contact Dermatitis Society (ACDS) maintains a database used by doctors to help their patients avoid any number of allergens. Insert random Futurama reference:
CAMP lists provide a breakdown of safe products by category and manufacturer, with the limitation that, of course, only companies who report their full ingredients can be included. As consumers want to be more aware of what they buy, companies are disclosing their ingredients more and more - but the fact is - and here is where I get preeeeetty cynical - customer ease, safety, and satisfaction do not come first. Profit does. If those things happen to be profitable, cool. But there is no requirement to fully list ingredients. Many companies avoid it by stating their formulas are proprietary. This may be true and I agree they are fully within their rights to storm the basements of anyone involved in the black market laundry detergent ring and prosecute.
Companies also benefit from the lack of regulation in both formulating products and labeling them ... So even when companies do disclose, they can, if they want to, easily hide things they might not want you to see. Take the catch-all "fragrance." Thanks, I guess, but if I don't know what the fragrance is actually made of, your list does little good for someone with allergies.
Also consider the many pseudonyms of chemicals that a company can list without sending up any red flags for the customer.
Case in point: formaldehyde. You probably wouldn't buy anything that says it contains formaldehyde, because it's mostly known as the caustic preservative that kept our dissection projects in biology class from turning bad. But it can also be called formalin or methanal, and there are
dozens of other formaldehyde-releasing chemicals used in personal and household products. Lotions, soaps, hair care, mattresses. It is sometimes used on clothing to create a wrinkle-free finish and on shipping containers to ward off bugs or rodents. It can be used in the processing of paper. It is released in cigarette smoke. It is very commonly found in building materials (many sources, including
Mayo Clinic,
DermNet NZ, and
World Allergy Organization). Nevermind that it is considered a carcinogen (
CDC).
Fun fact! The ACDS has an "
Allergen of the Year" list. It was formaldehyde in 2015 and in 2016 it was cobalt.
Yeah. The patch test was a relief, but it marked the beginning of a lot of sobering research. Thankfully, the vast majority of us will not get cancer or even an allergy due to formaldehyde exposure. In fact, most people with a formaldehyde allergy have to breathe the fumes, so my contact allergy to it, along with the cocktail of other things, is quite the anomaly. When I had some answers after all those months of itching, I think what struck me most was not the pervasiveness of the things I suddenly had to avoid, it was the irony of being someone who couldn't tolerate a bunch of chemicals but who had a deep, dark secret:
They clean stuff better. They treat and heal many, many medical conditions. They make your hair shiny. They make certain foods taste really, really good.
Plus I have a history with germs and hating them, which is another story.
Chemicals can be super helpful, but they can also be poisonous. Your body can only handle so much.
My body can only handle so much.
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| This is my sad liver, so tired of trying to cleanse me of toxins. |
Fast forward to 2014. I had managed to control my reactions for the most part, with some nuisance eczema on my hands. I had a happy, cuddly four-year-old and our family was complete. I made a very grown-up decision to get an IUD and was pleased with myself for being so responsible! Everything went along mostly as expected until about six months later when I just didn't have a period. I'm a pretty regular gal, and I was not pregnant, so it clearly had to do with the IUD. The IUD had to go.
Why is this part of the story? Because around the time the IUD was removed I felt a spark. I can't pinpoint the timing of it all, like this little far-away flame was coming closer and closer at such a slow pace I didn't give it much credence until it was right up in my face. Again.
Now I love a deal, like my mother before me. I also know the clothing and textile industries are HUGE polluters. So I like shopping the thrift stores, where everything has already made the biggest part of its footprint and nothing is more than $5.00. My mentioning of this, too, relates to the timing of things. It's all foggy memory and late-night internet research and good old-fashioned speculation - but I know these three things happened sometime in the early part of 2015:
And just like five years before, I figured it would pass. I thought I had unfortunately tried on some article of clothing that happened to be laced with formaldehyde from whatever detergent it was last washed in. Sure, now I was scratching myself bloody over some dress or pants or whatever, but by this time I knew how reactions generally played out and I was willing to be patient.
Weeks went by.
I was not better. I was very confused. And life kept on keeping on, and I kept itching, and I was back at the very beginning.
And so came Realization Number Four: life doesn't always look like you imagine it will.
I began to have wild ideas about what the problem could be. Hormones. I always thought the first round of allergies was triggered by pregnancy. If it wasn't the new-to-me thrift clothes, could this round be related to the IUD? For that matter, could it be
the hormones themselves that I was suddenly allergic to? I mean, it is a thing. There are people - bless them - who are allergic to parts of their own body. Their own hair, their own saliva ... you can become allergic to literally anything.
Back to the impossible list! Even though I had come to rely on that CAMP database like it was a religious text, formulas change every so often and hey, I spontaneously acquired allergies once so who's to say it couldn't happen again? And so, again, everything became suspect.
Good news: I did have an idea of a possible culprit (a blue dye) which was supported by certain evidence and as I started avoiding clothes I thought would be a problem, my skin got better. Bad news: I have always survived on a clothing diet of blue jeans and sweaters, blue jeans and t-shirts, blue jeans and jackets, blue jeans and blouses ...
It may sound petty but I resented not being able to wear jeans. I was tired of being on alert at all times because I had to worry about everything I touched. And then I couldn't wear the one thing I was most comfortable in and made me feel like me. And because I know "things could always be worse," throw in fair amount of guilt for all this self-pity.
My mental state was perilous. For one reason or another (moving, quitting my job
because of my allergies, totally unscientific trial-and-error on my part, long-lasting panic attacks) I had again spent months in varying degrees of agony before scheduling a patch test. I've put together a helpful graphic about that time of my life.
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| Do not let the calming colors fool you. |
Yes, it was quite the shit show. But I did finally make the call for my brilliant angels of petri dishes to put on their lab capes.
I don't think they saw my watery eyes as they put the patches on. There I was again, worn out, anxious, and on the precipice of relief and life-changing answers. I guess it's typical to have between 25-150 patches, but for this test I had 228.
On day five, I drove home in tears. Relieved to have my answers. Emotional about the (joyless) journey. Terrified about the future - because I felt forced to wonder
will there be a next time?
Eight things from the first round, eight things from the second. Amcinonide, bacitracin, balsam of peru, benzalkonium chloride, benzophenone-4, budesonide, cocamidopropyl betaine, decyl glucoside, ethylhexylglycerin, formaldehyde, lanolin, limonene, methyldibromo glutaronitrile, neomycin sulfate, quaternium-15, and shellac.
Sixteen things - but no dyes! Naturally, the first thing I did when I got home was dig out all my jeans, wash them, and revel in them.
As of January, 2017, I am managing reasonably well, and I'm still learning. After all this time, I'm still learning. My CAMP list is very short, with just a few options under a lot of categories, and literally ZERO shampoos for me to use. I am very, very careful and have been getting better about wearing gloves to do certain things, yet there are setbacks. The sources of my exposures still largely elude me, although I know I can expect a flare-up during a remodel project, or maybe after shaking an acquaintance's freshly-washed hand.
I've also begun to trade in my beloved and extensive wardrobe of thrift shop items for clothes that are not only organic fibers, but that are certified from farm to manufacturing to store to consumer. Except the jeans - I haven't given those up yet.
***
Your perseverance is admirable if you've read this whole thing. It has been a kind of a diary for me (I also kept
a timeline of how the second patch test went), but the most important purpose of this post is this:
I'd like to know if anyone else has a similar story. I know you're out there because the patch test clinic is a busy place, but it's been rather impossible to find you. I want to chat and let you know I get why you carry your own soap everywhere and travel with your own sheets. You could tell me how you manage. We could talk about how to lower the chances that more people will have to deal with this, if that's possible. We could talk about the total disaster that is navigating the medical and insurance systems. You could tell me about your awesome dog, too, and just be content in knowing that
I get it. I want a network of people who are informed so that none of us has to live this way in isolation, but with support.
My husband has worn my tears when I've been particularly uncomfortable, and he's done more research than I have on certain fronts. My family allows me to keep my own stash of supplies at their houses. Until I felt like I had to quit, my coworkers took up tasks that I couldn't do without fear of exposure to an allergen, even though they were in no way responsible for doing so. And August, as always, has just made me laugh. I owe my sanity to these people.
Please contact me, because I want to be one of your people.
A few more good resources:
EWG article on hidden hazards at home
EPA facts about formaldehyde
OSHA article on formaldehyde in hair products
GOTS textile certification
