Only Sometimes Clever

Sweet baby.  Sad skin.

I think we may have really had a breakthrough.  In case you didn’t see it in a comment I made on a previous post, on Monday, I couldn’t find my pure vitamin E oil (as suggested by my pastor!), so I got out an older bottle of vitamin E oil blend, whose first ingredient was soybean oil.  Almost immediately, her skin was inflamed, worse than ever!  That’s bad;  I have cried this week over the sorry state of her skin.  But, that terrible reaction appears to have been an answer to prayer, as I now have myself on a soy-free diet, and her skin does indeed seem to be improving.

My first reaction was, “I hardly eat any soy!”  I thought it would be a snap to eliminate.  But… that stuff is pervasive!!  It is in my non-dairy creamer (I’m back to regular half & half in my morning cuppa).  It’s in the protein bar I usually have on Sunday mornings.  I use soy lecithin in a homemade marinade I make about twice a week.  It’s even in my beloved Lay’s Stax!  And in my cheapo chocolate chips that we eat, and I bake with.  I buy them because they’re totally dairy-free.  But, they’re not soy-free!  Bummer.  AND,  soy oil is in the store-brand tater tots that we eat 1-2x/week.  It’s crazy, because virtually everything in my home is gluten-free and dairy-free, and it feels so good to just be able to pull something out of my pantry and know that it’s safe.  It’s been a weird adjustment to re-reading every label, checking for even minute traces of soy.  I don’t know how sensitive she is, exactly, but right now, I’m not taking any chances.  Often with food sensitivities, it’s the protein that is the problem, and the oil in the offending food isn’t nearly as big of a concern.  But, since Fiala’s bad reaction was to oil, I’m being very cautious.

Night before last, Martin came home to me nearly in tears, and VERY CRABBY because things were going very much awry with the kids.  He said after dinner, “Why don’t you go to Starbucks?” and at first, I was so ill-tempered I harumphed that I just wanted to stay on the couch and watch the baseball game.  Then, I changed my mind about two minutes later.  I said, “Call me when Fiala wakes up” and Martin replied, “No, there’s a bottle in the fridge;  I’ll feed her.”  Great!  But, we both realized the next day that the milk was pumped on a pre-soy-free day.  Ugh.   (Regarding Starbucks, they were out of the new gluten free Valencia orange cake.  Bummer.  And, at that Starbucks location, my options are always sit inside, where they keep the temp at 65° or something ridiculously chilly like that, OR, sit outside under the misters and cigarette smoke.  I chose cigarette smoke, and very much enjoyed reading Jane Eyre for about an hour and a half.)

So, it’s been very difficult to entirely eliminate soy.  But, this morning, for the first time in a very long time, the edges of the patch on her left cheek are pink (instead of red), and look like they’re truly healing.

Her skin problems have placed a near-permanent knot in the pit of my stomach, from seeing her in pain (when she scratches and draws blood) and discomfort (from itching)…  she hasn’t been sleeping well (meaning, neither have I, and not sleeping well at nighttime lends to her daytime crabbiness)…  I have felt very powerless to help with her skin, because nothing I have tried, both on my own, and as suggested by doctors, and as suggested by other concerned souls, has really worked.  A few things have slightly helped, or appear to help short-term, but mostly, it’s simply been a search for products or anything I can do to not make her skin worse, and it has been, by and large, a losing effort.

I’m also weary of fielding questions from others when we go out.  Maybe that’s dumb on my part, but we get so many comments from others, and I’m just tired of answering questions, and seeing multitudes more look at Fiala in concern or even fear like, “Can I catch that?”  I have seriously seen people recoil when I kiss her face.  I’m tired of that.

Obviously, my biggest concern is Fiala’s health.  I’m starting to be very concerned about scarring.  However, I find myself going out — even on simple errands, or to the library — less frequently, just because I don’t want to deal with others’ reactions to her skin.

I really, really, really hope that eliminating soy will solve her skin problems, or at least improve her skin greatly.

We do see a doctor on July 10, but that doesn’t mean that I’m just going to sit back, watch Fiala’s skin fester, and wait for the appointment.    And, anyways, Fiala’s pediatrician has been of such little help, it’s hard to hold out hope that the pediatric dermatologist is going to have a miracle cure that the pediatrician didn’t know about.

So.  That probably sounds whiny, but there ya go.  Keepin’ it real.