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Fiala health update. :)

It appears we’re on the right track with Fiala’s health.  She isn’t healed up quite enough for me to have full-on hope, but the hope is glimmering.  Last night, I talked with a woman who, 30 years ago, almost died from a systemic Candida infection, and comparing her story to Fiala’s was a confirmation.  Not that Fiala almost died.  But, much of what Fiala is experiencing, the lady had, too.  And she knows Fi well enough that, once I suggested to her that Fi may have Candida, it was like a light switched on for her, “Oh, yes… of course… why didn’t I think of that???”

We see the naturopath next week.  I’m going to ask for stronger antifungals.  Nystatin is working juuuuuussssst well enough to help, but it really has only made a small dent on Fiala’s head-to-toe symptoms.  Although — I know this is a little strange — I do know that fungal infections can be very slow to heal, and I know this because our dog suffered from Valley Fever, which is also fungal.  It took her most of a year to come back to full health.

At our favorite restaurant (the only one where everyone likes the food and there's something everyone can eat), Fiala's normal meal of plain refried beans and plain lettuce has been upgraded to having cheese on top, and a side of sliced avocados. She's in heaven.

The place which has had the most improvement is on her scalp.  From ear to ear, across the top of her head, Fiala had crust, a good ¼” thick in places, like the worst bout of cradle cap you’ve ever seen.  She lost quite a bit of hair from it, and for the last couple of months, when we go any place public, most of the time, I have her wear a hat, because it’s just scary/sad to look at, and freaks people out.  I was looking at hear head last night, and though her hair is thin, it is probably 80% healed, which is just amazing.

Fi’s chin is significantly better, as well.  It’s red and rashy, still, but not oozy, crusty, and bloody.

Other places on her body have slightly improved, and some not so much.  That may be because we could use up the 30g tube of Nystatin in a day or two if we followed the instructions to apply it to “all affected areas” three times a day.  Instead, we have to make the tube last for at least a week.  So, she’s not getting great coverage on “all affected areas” which is virtually every square inch of her body.

Fiala is still on a sugar-free and starch-free diet, minus a small ration of blueberries daily — her one joy!  I’ve even tried some protein-type foods, just to see how she’d handle it:  chicken, hard cheese, almonds…  I’m still leery of pretty much everything, and it’s hard to tell often when something has an ill effect.  But, so far, so good.  Fi doesn’t like chicken, though, we’ve discovered.  She adores cheese.  “Orange cheese?  Can I have orange cheese?”  And we’re only two days into an almond trial, so it’s too early to tell, but she does adore them, and is very excited to be eating almonds.  🙂  Precious girl.

Unrelated to health, the other day, I was making dinner, and my girl who lives to “snug” came up to me with arms upstretched and said, “Mama, will you please hold me?”  Now, normally, I would plop right down on the kitchen floor for a few snugs, at least, but I was in a terrible hurry, and said, “Oh, Fi.  I’m so sorry, but I can’t hold you right now.”  She flopped down in despondency, and wailed, “But I can’t hold myself!”  Ha!  So true.  We can’t hold ourselves.  That’s why we need Jesus, and the Body of Christ, and the support of family and friends….  She’s a good reminder of all of that, to me.  I’ve been giving much thought lately to how the things that the enemy has meant for our destruction, the Father — as is His specialty — turns it into a blessing, and for the benefit of many.  I feel like that, even though our three-year battle with Fiala’s health is not over.  She is so worth it.  So very, very worth it.


Dark nights of the soul and other chipper topics

I lost nearly two pounds yesterday*, and didn’t feel awful all day long.  I felt quite full, in fact.  I crave sweet stuff, so I wasn’t necessarily eating what I would PREFER to eat, but that’s different than being actually hungry.  I still got hives in the evening, the odd and troublesome symptom that brought on my current anti-Candida diet.  Additionally, I had terrible knee pain (which I guess can be a symptom of yeast die-off) last night, which persists today.  I’m taking aspirin, both to relieve pain and any inflammation, otherwise I just couldn’t function.

Though the world of Candidiasis and its treatment suggestions can leave one’s head spinning, I did a bit of reading this morning, and apparently, bentonite clay helps with cleansing from Candida overgrowth and helps to minimize the die-off symptoms.  So, I’m picking some up tonight.  I’m getting more colloidal silver, too.  Fi broke our large and expensive brand-new jar a couple of weeks ago.  A couple of months ago, in a fit of “I’ll try just about anything!” I rubbed some colloidal silver into her super-bad cradle cap/crust, and onto her chin (which has always been her most troublesome spot), and it helped somewhat, for reasons unbeknownst to me.  Well, actually, I was thinking it was colloidal silver’s anti-bacterial properties that was helping, but I guess it was the infectious opposite of bacteria — fungus — that was causing the problem on Fi’s skin…

Sweet Fiala, romping in our two-months-later-than-everyone-else fallen leaves. You can zoom in, if you care to, to see her sad skin.

This whole thing has made me think back to one of the first — and worst — doctors I saw for Fi.  She was eight months old, and one of the things he said was, “That’s impetigo!” on her chin.  I questioned him, and he said, “Well, I could flake some of that crust off, which would hurt her, to do a culture which would just prove it’s impetigo, or I can just prescribe the antibiotics for it.”  That was Fi’s first ever round of antibiotics, and I have kicked myself for the last 2½ years for not responding, “Well, hurt or no, let’s culture it to be sure.”  Because now, more than ever, I’m wondering if she hasn’t been struggling with yeast this whole time.

Or, maybe it was impetigo at the time, and she’s just been back and forth.  I really don’t know.

I am, however, feeling a little more upbeat right now, because it’s looking like we’re on the right track with this whole Candida thing.

On the other hand…. Candidiasis is a symptom, not a root issue.  Knowing her root issue would sure be nice.  But for now, I’ll rest in the encouragement of just even knowing how to treat her symptoms.  I feel better going somewhere, rather than just drifting.

I did rather need to drift, though, for a season.

I wrote this to a dear friend, yesterday:

I had a serious “dark night of the soul” for about six months right around the time when Fiala was one year old, when it became apparent that no one knew what was wrong with her, and it wasn’t making any difference how many doctors we saw, no one knew. I didn’t know. The one thing I knew is that if our Father simply glanced her way and said the word, she’d be healed. And He didn’t do that. That season was the only time in my life where I have seriously doubted the love of God, and been truly angry at Him. And I had to learn to absolutely lay that down, and say with all my heart, “Though you slay me (or my child), yet will I trust you.” And have His presence be enough. And not have my love or trust for my Father rely on whether or not He answers my prayers or heals my baby.

I read a true story recently of a man in Afghanistan who had become a Christian, abandoning Islam, and was imprisoned and tortured for his beliefs, and he had — truly — a dark night of the soul where he felt totally abandoned by God and questioned Him, “Haven’t I been faithful? Haven’t I done everything You have asked of me? Haven’t I shared your love with as many people as I can?” Like Job, he asked God to search his heart to find any wicked way in him, and he felt totally clean before God. He truly was a faithful and true servant of our Father, and He knew God had the power to say the word and remove him from the torture. And one night, as the man lay, beaten, on the bare stone floor of the prison, he had a vision of Jesus, and Jesus came into the room, laid down on the floor next to him, reached over, and held the man’s hand. And that changed him forever. That was enough. If Jesus is with me, with him, with you, holding our hand, laying down with us in our suffering, that is enough.

I had already had somewhat of a revelation of that before I read the story, but that SEALED it. We’re laying on a stone floor, and Jesus comes in, lays next to us, and takes our hand without a word, and that is enough.

By about April-ish of 2010, I stopped almost all of Fiala’s medical care, minus a few trips to urgent care, and a couple trips in 2010 to a family doctor, who eventually dropped us when we discontinued vaccinating.  We’d seen seven doctors by that point, and all of them had pretty much said either:

  1. You’ll never find the source of all her allergies.  Have her eat a healthy diet, and here are eight prescriptions for her symptoms.  (Or fewer, though one doctor truly gave us eight the first time we saw him.)
  2. Whatever food you notice that is bothering her, don’t feed her that.

Option #1 is bogus, option #2 is, “Well, duh.  I didn’t need to spend a $50 co-pay to figure that out.”

It was becoming very clear that I really needed to drop my incessant pounding at God’s door, “HEAL HER!  HEAL HER!!  DON’T YOU LOVE HER???!!??  WHAT IS WRONG WITH HER??!!???”  That was just not healthy or helpful on any level.  I stopped, too, my near-daily searches on the internet for cases that matched her symptoms, to try to find out what might be at the core of her life-long health struggles (literally — first symptoms showed up when she was two months old, and she is now 3 years, 2 months).  And, I’ve taken these last 20 months or so to just do the best I can with what I have, and work on not letting my trust in my heavenly Father and my love for Him rest on whether or not He chooses, in His sovereignty, to heal my girl.

And, I think I’ve come through that.  It took me a while… maybe a year or so.  But, I no longer feel rejected by God, and I truly feel His presence powerfully in my life, and that is enough.  It really is.

And, that is why I felt… clean and safe (with caution), to visit a new doctor.  I was kind of thinking it might be a pediatric gastroenterologist.  But, my hubby wanted me to go to a naturopathic medical doctor, though he still thinks an NMD is more like a “normal”/allopathic doctor who has a bent toward natural treatment (or extra training, beyond an MD).  That’s not the case.  No matter.  Through the friend of an acquaintance, I found a particular doctor of whom encouraging things were spoken, AND the only insurance she takes is the kind I have.  Voila!  Fi is now a patient of Dr. Jesika DiCampli, though it is still a $50 co-pay.

We go again on Friday.

Before our first meeting, I was cautious, and not even optimistic.  Now, I’m cautiously optimistic.  The doctor didn’t find the Candida — it was my husband who suggested it, as his father has struggled for years with Candida overgrowth.  We’ll talk with her about it on Friday.


*Though my primary purpose right now is not to lose weight — it’s to lose what appears to be Candida yeast running rampant in my body — I would like to lose more weight.  Here’s probably more than you care to know about my weight.  I’m 5’7.5″, and before I got married, I was 138 lbs.  After each child, I have “settled back” into weighing 155 lbs.  After I had Fiala, though, I was pretty stubbornly stuck at about 167-168, pretty much losing NONE of my pregnancy weight gain, since I’d only gained 17 lbs for her pregnancy.  I went on a Total Elimination Diet while I was nursing her, rather than risk her reacting badly to very pricey elemental formula, since she was having severe allergic reaction to what was in my breastmilk.  The allergist had told me that if she reacted as badly to the elemental formula as to my breastmilk, she would end up with a feeding tube.  I said, “No, thank you” and embarked on an extremely restrictive TED.  I lost more than 30 pounds, ending up at 135, less than I did when I was married at age 21!  While I enjoyed trying on size 6 slacks and having them be a tad too loose, that was short-lived.  After I stopped nursing Fiala in January 2010, I rebounded, over the course of about eight months, right back up to 165.  Over the last year or so, I’ve worked — a little — on dropping weight, and now hover around 155-156.  Yesterday, I weighed 155.9, today was 154.1.  So, now you know.  😀

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