Back To Black

Sidelined by The Pain, I’ve been taken aback.  After a year or more of a severely restricted diet that has kept me virtually pain-free, I’d nearly forgotten how disruptive — how debilitating — it is when it comes.  But these past two weeks, it’s returned and been inexplicably growing and, today, has risen to a crescendo.  M had to take the girls — his busy day suddenly canceled — and I retreated to bed, to curl into a ball and wait.

I have no idea what is causing this, which terrifies me because it means I am helpless to control it.  When I got the first twinges a fortnight ago, I wondered if it might be a new cereal I had begun eating.  It listed “natural flavors” on the ingredient list — which when found on the label of a barbecue sauce, will almost always include soy …but when on a breakfast cereal?  I reckoned that soy was an unlikely candidate and tentatively tried a bowl: no reaction.  I tried again a few days later, and then again, still with no ill effects.  Confident now, I began eating it daily — a welcome addition to a diet that contains almost no quick-to-fix foods — but when the first quiet twinges began, I looked dubiously at the cereal box. After a week of those pangs, I went with my suspicions and cut the cereal (and the accompanying rice milk) back out of my diet.  And waited for the pain to gradually die away.

It didn’t.  In fact, it has been increasing little by little, until this morning when it flared up with a ferocity I haven’t felt in a long time.  M sat on the edge of the bed and, together, we wracked our brains for another culprit.  We couldn’t think of anything new or different in my diet…  not at all.

Except it occurred to me is that I’ve recently run out of my usual moisteriser and started using some other that was in the cupboard.  They both contain soybean oil (of course! doesn’t everything?) but perhaps now it was in a different strength.  Is it even possible that I could be reacting to a moisteriser?!?  I don’t have a soy allergy, just a strange hormonal reaction when I eat it.  Or… perhaps wear it…

I don’t know what to think.  All I know is that I don’t want it.  And all I can do is pray desperately that this pain just goes away, as mysteriously as it appeared.

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The Allergist: No News and Bad News

I am thoroughly confused. No sooner had I said that the pain had gone away for a few days than it came back again with renewed intensity. It has been going on for three months now, on a daily-to-near-daily basis, and I am sick of it so, naturally, I am trying every sensible avenue to figure out what it is and to make it go away. And the more I do that, the more frustrated and confused I become.

For anyone who is not familiar with the story — and on the off-chance anyone out there can diagnose me — let’s start with a little synopsis:

• I had the stabbing pain in the UK, in my right breast right after feeding. But it was annoying-but-livable, so I wrote it off to being one of the myriad aches and pains that are par for the course in early motherhood.
• In the first week here in the US, the pain escalated to excruciating levels — to the point where I was writhing on the floor, shaking all over, losing control of my bladder — and seemed to have lost its connection to feeding and was instead coming at any point in the day. After 4 or 5 days of this, I could stand it no longer and ended up in ER.
• The ER doctor — stumped — referred me to a breast surgeon, who — baffled — referred me for mammograms (7) and ultrasounds (2). It was the radiologist — perplexed — who finally asked if I ate much soy and, upon hearing that I drank soy milk instead of dairy, declared that it was well-known that soy caused severe breast pain and told me to cut out the soy and watch my symptoms improve.
• I did and they did — to a point. After two weeks of no soy milk, the pain had halved from utterly debilitating to merely disabling, and there it seemed to plateau. I began a witch-hunt for soy in other products and discovered, to my dismay, that it was in nearly everything that had a label attached, from rice milk to bread to salad dressing to herbal tea to my calcium tablets. I began to cut everything out that wasn’t confirmed 100% soy-free.
• That process resulted in a truly radical overhaul of my diet, and took a lot of effort and quite a few failures along the way. I made the mistake of eating the family Easter meal even though I didn’t know all the ingredients, and I paid a painful price for it that same day. I discovered that eating out — anytime and anywhere — was impossible. I spent weeks living on toast and peanutbutter and a bit of fruit, before eventually fleshing out my diet to include plain meats, fresh veg and fruits, and carefully checked breads — nothing extra, nothing more.
• During this process, it seemed that the pain came in quickly after eating anything with soy — more like a reaction than the result of a build up. My mother brought us a bowl of her jalapeno spicy beef one night and I was in pain within an hour — I rang her and asked her to check her labels (she hadn’t!) and there was soy in the tomato sauce she’d used and in the jar of jalapenos. My body had known and, with reactions as quick and clear as that, I began to wonder… perhaps it was actually an allergy?
• In the meantime, I registered with an OB/GYN and met with the nurse-practitioner there, and registered with an internist/PCP (equivalent of a GP) and met the nurse-practitioner there. The first was as perplexed as everyone else and eventually prescribed an ultrasound of my gall-bladder, just for process-of-elimination purposes. I don’t think she’s right and haven’t booked the ultrasound yet — that’s another copay I can put off until next month. The second didn’t have any more insight than anyone before, but when I mentioned my thoughts on the possibility of an allergy, she jumped on it and suggested I see an allergist. I’d already got two such appointments lined up for the girls, so it was easy to make another for myself.
• Through all this, the elimination diet seemed to be bringing about an improvement of sorts. I now had the occasional pain-free day, though when it returned, it was with particular intensity. And it had seemed to return to always occurring post-feed, just as it had been so long ago in England. It was better, to be sure, and yet… still it was there, still nearly every day, and I was sick of being in such pain — stopped in my tracks, hands to my chest, unable to speak — nearly every single day.

I went to see the allergist today. He had been so friendly during the previous two appointments for the girls, but now seemed a bit wary — perhaps he was wondering if this woman who had turned up in his office for three weeks running was actually some kind of allergy-fetishist with problems in her mind rather than her body. Undaunted, I explained everything to him, the story now so long and convoluted that I had actually written down notes so I didn’t mangle it or forget important details.

He didn’t believe it was an allergy. There were no supporting symptoms — no rash, no nose or breathing problems. He asked how old E2 was and how long I planned to continue breastfeeding her. I explained that I wanted to feed her until she wanted to stop and that, besides, I didn’t know what I would wean her onto — she’s allergic to dairy and I am most certainly not putting her onto a soy-based milk after all this! He suggested rice milk, and I explained (to his surprise) that I’d been unable to find one that didn’t contain soy. He mused aloud as to what she actually needed milk in her diet for… protein could be had from meats, calcium from other sources, vitamin D from supplements, and liquid from water or juice. I wanted to explain that it is so much more than milk… it is antibodies… it is comfort… it is bonding… it is so much a part of the kind of mother I want to be. But I felt he was already viewing me with suspicion, so I listened and mmmmm’d in reluctant agreement.

He said he could do a skin-prick test if I wanted, though he felt it was unnecessary and didn’t see any reason to recommend it. I said I’d like to do it anyway — at least it would rule out an allergy definitively, even though it would probably also confirm in his mind that I am a silly attention-seeking freak. He left while his nurse applied the test. It proved negative, which gives me confirmation that this is something I can eliminate from my concerns.

He was gone a long time and, when he returned, he told me he’d actually been on the phone consulting with his daughter, an OB/GYN in California. She had said that soy doesn’t cause pain in breasts — it’s progesterone that does that, not estrogen as is in soy — and, in fact, soy can soothe breast pain and they actually prescribe it to counteract the pain caused by progesterone-rich contraceptives. She had even checked on MediLine (?) to confirm it. He said that the radiologist must have got it wrong. And beyond that, he was at loss — just like everyone else. He explained, with practicality and resignation, that I had two choices: I could deal with the pain and carry on searching for an answer, or I could wean the baby. I could see which choice he felt was the more sensible, as he gazed down at my baby, standing on her own two feet, trying to talk, and rapidly becoming more of a toddler than a baby…

And so, I am confused. I am utterly and completely confused. Is it caused by soy? Is it soothed by soy? Is it due to feeding? Is weaning the only way of stopping the pain? Was the radiologist right? Is the allergist right? So long as I can find the answer, I don’t care what it is — I have no agenda. I am not against soy as such — if it turns out to not be caused by soy, I will be the overjoyed to jump back into a normal diet again. I will eat at restaurants again! I will buy what I fancy at the supermarket! I am not doing this to seek attention — I don’t need the endless appointments, the being poked and prodded, or emptying our bank account with copays. I just want this pain to stop. That’s it. We have a million difficult and stressful things to deal with at the moment, and I just want to end this pain being one of them. And… I don’t want to wean my daughter — my tiny, underweight, food-intolerant daughter — until she wants to.

———————

As the doctor was leaving, and the girls were rapidly and very vocally coming to end of their patience, I asked him about E2′s blood test results. Ah yes! He rushed through them: she is significantly allergic to egg, mildly allergic to dairy, borderline allergic (“it is hardly a positive at all, but it isn’t a negative…”) to soy, mildly allergic to bananas, wheat is a negative, and significantly allergic to a plethora of nuts, including peanuts. The results for avocado and oats aren’t in yet — I’m to ring next week for those.

The baby was yelling for her milk by now, and he had to repeat himself at times over the din. I stood up and bounced her on my hip as I asked, what does “significant” mean? He explained it in terms of E1′s reaction to egg — that reaction to a mere trace of egg clinging to piece of pepper she ate, which had caused her face to puff up quite shockingly, her eyes to begin to swell shut, and had her sobbing in distress, coughing and gagging violently, and tearing at her face so as to pull her very skin off and rip her eyes out. From her blood tests, E1′s egg reaction registered a 2.09 on his 0-10 “International Something-or-Another” allergy scale. E2′s nut reactions,by contrast, had all returned a result in the 10 range — these are very, very serious allergies. I asked, hopefully, if she might outgrow it? He said she might, but his expression showed clearly that he didn’t think it likely. The girls were fed up, their patience was gone, and he had to go — I never got a chance to ask about the other reactions.

When I got home, the reality of the whole appointment hit me… No answer about the pain (and I had been so damned hopeful!), my best option being to wean E2 before she’s ready, and these test results! Egg, dairy, and nuts… Try to think of foods that don’t contain any of them — any trace of them. They’re in everything — cakes, cookies, candies, cereals, Chinese food (peanut oil), anything with mayonnaise in it, hamburgers (egg to bind), meatballs, anything that’s been breaded… Egg shells are used to clarify coffee. Even breads and sweets are often brushed with milk or egg to make them glisten. So hard to avoid! And the nuts allergies (and possibly the egg) are to life-threatening levels!

I looked at my little girl, so unsteady on her spindly legs, at that moment bending down to pick something unknown off my kitchen floor, and I realised the implications of this. I would always need to worry about every tiny thing. I will be obsessively reading labels for nuts the way I have been for soy for the rest of her life, but not to avoid pain — to avoid death. I will be worried — life-and-death worried — every time I send her to a birthday party, or on a school trip, or to a slumber-party. If someone gives her the wrong thing… if she eats the wrong thing… will they know how to use the epipen?… will they take her to ER?… will they realise how serious an allergy is? It suddenly felt like a life sentence. It was too much. My tiny, tiny, precious daughter! How could I possibly protect her? How could I keep her safe from this?

I had wanted to sit down and talk it all through with the doctor much more than we’d been able. I wanted to go through her reactions properly, have each one explained so I understood it and knew how to handle it. I wanted to ask him a million questions (…we have to avoid food containing nuts, but do we have to avoid all traces of nuts?… what about food made on equipment that’s previously handled nuts?… do I need to stop eating nuts while I breastfeed?… are her spindly legs thick enough to use the epipen on, or will the needle jab into the bone?…). It seemed a hell of a bombshell to be dropped like that, in a rush, at the end of an appointment. I thought about ringing up and making another appointment to go through it all properly, but I felt sure that would put him over the edge of suspicion with me — four appointments in as many weeks would have me chalked up as an attention-seeking loony for sure.

It was all suddenly too big for me — so much stupid medical stuff, so much pain, and now this worry and all these swirling questions… I was sick of it all. I turned toward the kitchen sink and leaned heavily on the counter-top, my head sinking low, my hands in my hair. The girls were playing happily with some blocks and a doll behind me. I started sobbing and I couldn’t stop.

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Like an Unwanted Guest who Never Leaves the Party

I keep telling myself the pain is going away, but it’s not. It’s much much less than what it was — I am no longer rolling on the floor in agony — but it still comes every day, and it is like a repeatedly stabbing needle: still quite painful. When it comes, it makes me irritable and short-tempered and, if it comes at night, completely unable to sleep. Time to face facts: it’s hit a plateau and it’s not been getting any better.

When it came yesterday, the stabbing made even the littlest irritation too much to bear and, to my shame, I found myself barking at the girls and at my mother. I was suddenly tired of being this person — tired of being someone whose personality was pulled and pushed around by pointless pain. Surely the soy milk should be out of my system by now! What on earth was making it hold on?

I had a sudden revelation: other foods I am eating must contain soy — enough soy to maintain the pain at this lower level. Of course! My mother and I started reading through ingredient lists on the packets in the fridge and the pantry… and there it was — in my rice milk! Silly me — because the rice milk was sitting on the supermarket shelf as alternative to soy milk, I’d bought it and drank it and just assumed it would contain no soy. Why else would it be available but for people who don’t want soy milk? But there it was, staring back at me — the fifth ingredient.

I am not drinking milk and am avoiding dairy because of E2′s dairy allergy; I am not eating soy because of the incredible pain it causes me; I am avoiding high-fructose corn syrup (HFCS) on principle and out of indignation. What on earth can I eat?

Half-asleep and on auto-pilot, I started to make myself a bowl of cereal this morning, and then remembered yesterday’s discovery… sigh… I would have to eat my cereal dry. Now curious, I read through the ingredients on the Special K box: HFCS played a starring role (I’m sure that wasn’t the case in the UK…?). I put it back on the shelf. “Toast!” I thought. I stopped for a moment to check the ingredients — the fact that our bread contained HFCS didn’t surprise me, but the soy certainly did! It went back in the breadbox. Why on earth are these things added to my bread? I don’t need them when I make my own bread, so why does store-bought bread need them?

Now on a mission, I opened the cupboard door and began grabbing tins and packets like a mad woman. HFCS in nearly everything — I knew that would be the case — but soy products were nearly as bad. Soy in my milk, soy in my bread, soy in my Campbell’s soup, soy in my meatloaf, soy in my tortillas, soy in my Club crackers… The list of foods that might be adding to this continuing pain was growing as long as my arm, and the foods that I felt safe eating were diminishing rapidly. I made myself a cup of tea with no milk, and had some oatmeal (made from scratch — no packets, thank you) topped with cinnamon and blueberries. I wondered what on earth I’d have when I got hungry for lunch…

I am deeply concerned by this. Almost without exception, it was the American products that contained the never-ending HFCS and that insidious added soy. The imported European foods that I’d treated myself to — real pesto, English cheese biscuits, Italian bruschetta — contained none of it. What is America doing to itself? Grocery shopping should not be like running an obstacle course; food is best when it is simple and honest. You are what you eat — you are. And if you stuff your food with needless junk and fillers — turning it into something that fills your stomach instead of nourishing your body — then your body (and your mind) will return the compliment.

It is nearing lunchtime and I am at a loss what to eat. Bananas… avocados… more oatmeal?… Perhaps I have to look the bright side — if I have next to nothing I can eat, I might, at long last, lose this baby weight. If I don’t look at it positively, this inability to do something as simple as feed myself in this new and strange country may truly send me round the twist.

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