E-mail to my pastor’s wife

We have a e-mail prayer loop in our church, usually overseen by the pastor’s wife, who, in my opinion does TOO MUCH, but that’s because she’s willing, competent, and caring.  🙂  I am usually hesitant to send in something for prayer, because there are so many people with other, greater needs, like brain cancer, and heads of families with no job, and people getting major surgery, that sort of thing.  But, today, after (WARNING:  TMI ON POOP AHEAD) a gigantic diarrhea blowout from Fiala that went everywhere, after I had literally only been eating corn, beans, and ham for the last two days, I about cried.  This was after she woke up four times last night itching and crying, and scratching herself bloody.  So, is it corn??  Is it pork???  I don’t know.  I called my husband and told him, “That’s it.  I’m just going to eat beans.”  He’s not really supportive of that, but I don’t know quite what to do.  I told him I was VERY open to suggestions, if a beans-only diet seemed too extreme for him.  Frankly, it’s looking like a good idea to me, if it will heal Fiala.  I’m spending so much time taking care of her, and the results are not stellar.  She’s still in discomfort or pain a great deal of the time.  If we could just get her HEALED by me eating beans 24/7 for a few weeks, then that seems like a fabulous idea right about now.

Martin suggested I e-mail Nancy.  On one hand, I don’t want to, because I then feel like a whiny …  I don’t know.  Whiny complainer, I guess.  But on the other hand, I have great faith in the effectiveness of prayer, and the power of the assembled Body of Christ.  And, I know that there are some serious warriors in prayer in our church, and it would be a great relief to me to know that they’re praying.  We need revelation, and I don’t see that happening, apart from the Holy Spirit.  So, I sent the e-mail.

(By the way, I know some of you are tired of reading this — believe me, I’m tired of living it, and my heart is just BREAKING for my little girl who is so snuggly and has a brilliant smile and huge, sparkly eyes, who is just not healthy.)

Hi, Nancy.

Well, I’ve reached a point of desperation with Fiala’s health, and I’m asking for prayer. We have spent MONTHS and HUNDREDS of dollars (probably close to $1000 in the last few months on co-pays and prescriptions) to an assortment of doctors, used all sorts of medications both natural and prescriptions, undergone a wide variety of tests, and while we have seen *some* improvement, it’s minimal. She is still having major skin problems and digestive problems.

Literally, the ONLY thing that I know is safe for her is beans, and I’m not kidding. Every fruit, every meat, every grain, every vegetable, every seasoning… it all seems to bother her. Sometimes it’s hard to tell. For instance: we gave her peaches for three days in a row, and she broke out in a head-to-toe rash that lasted for two solid weeks, so it’s hard to tell if the stuff we gave her while she had that rash caused additional problems or not.

She has a long list of things that we know for certain she’s allergic to, but she is still having serious problems. (Things we know for certain she can’t have: egg, soy, milk, rice, potato, garlic, zucchini, carrot, bananas, apples, pears, peaches, coconut, sorghum, onion, mushroom, plus we suspect a number of other things, but she hasn’t yet been tested for them.)

We medicate her skin with FOUR different medications, she’s on two different allergy meds, plus other over-the-counter things for her skin, etc. Plus, as you know, her itchy skin leads to scratching, which leads to infections, which led to antibiotics, which led to the WORST yeast infection I’ve ever seen — she was a solid red, oozy welt from her belly button around to the top of her buns. Bless God, she’s mostly recovered from that.

It’s very time consuming to take care of her, very heart-breaking, and right now, we’re not seeing an end in sight. We’re not even sure if the allergist she’s going to is the right doctor for her, but we don’t know where else to go. Plus, on a basic level, it’s hard to pay a $50 copay for a doctor we’re not even certain is helping her, but where else do we go??? We’ve had 1-3 visits to the doctor each week for the last two months, almost all of them with $50 copays.

Also, it’s hard to care for a husband, a home, four other kids, school, Little League, making meals, etc. Everything is suffering because my time is so extremely involved with Fiala. Or… I catch up on everything else, and end up with not enough time to be faithful on her multitudes of medications for a few days and then her skin is worse than ever. I just don’t have enough time and energy to take care of my family and home adequately. When I have a sick kid, I can drop most everything for a week or two to take care of him or her, but this is going on months and months, and more and more things are undone.

We have another appt w/ the allergist on Monday. I am going to ask him to oversee a strict elimination diet, where Fiala and I literally start with ONLY beans, for every meal, until she’s healthy, then start adding things in, one at a time. Martin thinks this is too extreme, but finding out one thing here, two things there, over weeks and months is not cutting it. We need good information, and we need it yesterday. I don’t see any route right now other than doing something extreme. (By the way, I’m still nursing, and even the doctor agrees that it is likely that even the most hypoallergenic, expensive prescription formula wouldn’t be any better, and it would likely be worse, so anything Fiala has to eat, I have to eat.)

We need wisdom, discernment, and answers, both for ourselves, and for our doctor. We need Fiala healthy. She’s not. Her skin, her digestion… she’s not sleeping well, waking 2, 3, 4+ times a night, itching and crying, and with diarrhea….

We just need help. We need healing. We need prayer. We need the power of God and the revelation of the Spirit. I hate to be a burden to others, but we need the body of Christ.

Love you.

Call with any questions.

~Karen

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About Karen Joy

I'm a partially-homeschooling mother of six -- 3 boys ages 19, 17 and 15 years old, and three girls: 10, 8, and 3. I like birding, reading, writing, organic gardening, singing, playing guitar, hiking, the outdoors, and books. I am a natural childbirth advocate and an erstwhile birthing class instructor. I have a dear hubby who designs homes for a local home builder and who is the worship pastor of our church. I live in the desert, which I used to hate, but now appreciate.

Posted on September 11, 2009, in Allergies, Babies, Christian Living, Christianity, Digestive Woes, Medical Stuff, Motherhood, Sad Things, The Kids, Vineyard Phoenix, Whining. Bookmark the permalink. 17 Comments.

  1. So, so, sorry that you and little Fiala are going through this. {{{HUGS}}}

    Have you seen a naturopath, accupuncturist, or other alternative practitioner? I’m sure you’ve probably already thought through all these things. I wish I could be of some help. Poor baby!

    Lord, give my sister some answers soon! Better yet, just heal Fiala completely and dry up this allergy. In Jesus Name.

  2. I foget how old she is but I suggest this having seen(ok she told me the long awful story) someone else go through something similary years ago with a baby they adopted. The baby couldn’t handle anything and everything cause MAJOR stomach issues and other problems.

    They started her on raw goat’s milk and that was all she had for months. She was close to a year when they did this. It took quite awhile and then they started slowly introducing things. I think she is a teenager now. (she was 11 the last time I saw her.) and she was doing very well. Also I think the maker’s diet suggest going off everything but raw goat’s milk and starting from there.

    I do pray that you find something fast.

    • I was on Craigslist a couple of days ago for something totally different, and saw someone offering raw goat’s milk for sale. She’s 10 months old right now, but I made a mental note of it, to get some raw goat’s milk to try on her when she’s 1 or so.

  3. aww! you poor thing.. what an awful time you are having with food!!

    Here are a few things to ponder (although I’m sure you’ve already thought of them). – perhaps she is allergic to the pesticides/herbicides on fruits/veggies? have you been eating orgainc? -what about an environmental allergen that might be complicating things making you think it’s actually food related when it might be something else?

    It’s so hard to watch our kids suffer and just not know what to do about it. I will pray for you!!

    • I have thought about the pesticide thing, Melanie, and then my head caved in because it was too overwhelming. We only eat about 25% organic. I do wash everything thoroughly… We already spend $200 a week on groceries for our GFCF/etc diets for our family of seven, and I buy organic whenever possible. But, I just absolutely can’t afford to take us to complete organic everything.

      I think (as does the allergist) that it’s unlikely to be an environmental allergen, because virtually all of the time, those trigger the fast-response sort of reactions, and Fiala doesn’t have any of those. She was tested for a panel of environmental allergens (prick tested, which catches the fast-response allergens), like molds and pollens, and tested negative to all of them.

      Plus, our family’s history is just chock-full of food-related allergies and intolerances. Other than pine (which my almost 8yo has), I don’t think we have any environmental allergies of which I’m aware.

      Thank you for your comment and your prayers!!!!!

  4. I am truly heart broken for you love. And poor sweet baby Fiala. I am joining your church in prayer for you and the whole family. Don’t feel whiny – goofy love. You have been very practical and decisive about her care and doing everything in your power to find answers. I am certain that He will answer you and looking forward to hearing how He takes care of you.

    I love you very much honey. Walk confident in His provision and healing for your family!!!

  5. Hello there
    My niece had a horrific allergy to corn. Never slept, would hardly eat. And seemed to react to everything. The corn didn’t show up as an “Allergen” on all the testing they had done until she went to see a Doctor of Oriental Medicine who confirmed it. Her excema was so bad she bled from it – they told her she would be scarred for life. When she entered into the Chinese doctors office – he noticed right away she was also suffering from some sort of strange infection which covered her skin where the excema did not. She got the infection from the hospital when she was born. So, there was something environmental in conjunction with the dietary. My sister had been to countless docs and he was the first person to be able to “identify” the infection. It has been 2 years – he cured her. She is able to have very small amounts of corn – but does not care for it very much – and has the most beautiful skin I have ever seen. Not one scar. Truly amazing.
    It’s quite possible – depending on her age of course- that whatever she is in fact allergic to (+ the medication she has been on) has caused her digestive system to weaken significantly. Which in turn causes “leaky gut syndrome.” Most docs don’t recognize this as a legitimate problem. But, my son at one point was sensitive to over 30 items due to leaky gut. Once his gut was healed – which took some time – he has become a totally different child. He never slept, had some behavioral issues because he felt so badly all the time and would suffer from constant skin irritations.
    I would definitely recommend a naturopath or chinese acupuncturist. They can offer perhaps a different perspective when you need it most. I am truly sorry that you are going through this. It is so incredibly frustrating not to have any answers. And to be so exhausted on top of it all – I am praying for you. Hang in there.

    • Thanks for the comment, Stephanie!

      Does your niece live in Phoenix by any chance?

      I don’t have a problem with MOST naturopaths, but my problem is I don’t know quite how to find a good one, and I don’t have the cash to drop on going to a bunch of different ones until I find the right one. Our chiropractor — STELLAR chiropractor — is also trained as a Chinese accupuncturist. I think I’ll ask him about that. He’s also about 95% certified as a naturopath (the school he was going to lost its funding — long story — about a month before he was done). He seems to think that Fiala can be cured just by adjusting her back. I’m not sure about that. However, we will be bringing her in for an adjustment, likely next week.

      Maybe I’ll ask him for a recommendation to a good Chinese herbalist, as well.

      As far as her age — she started her first symptoms in January, before she was 3 months old — her birthday is 10/22/08. (I have been g.f. for nearly 7 years, and I was 99% dairy-free at that point, too, and she was totally breastfed.) I spent the next nearly-two months trying to treat it naturally, and she went on her first medication (a topical steroid) after that, when she was about 4.5 months old. So, whatever it is was obviously passing through my breastmilk. I have a hard time believing, though, that she had leaky gut syndrome from THAT early, when she was breastfed, and GF/almost CF. How did you treat your son’s leaky gut? I just started Fiala on Florastor. (I have to mix it with about 1/2 tsp water and give it in a dosing syringe, because she won’t take ANYthing from a bottle or sippy cup, and won’t eat food mixed with it…)

      Thanks again for your input!

  6. Um, you are not a burden. This is serious and real. I will be praying.

  7. My heart breaks for you and Fiala! God is able to take it entirely away and help you find an answer, I pray he will bring her to full healing and give you peace!

    Your family is such a blessing to many people (some you don’t even know IRL) in part because of your tireless research and blog resources. Better than that you are encouraging, thoughtful, witty and a bold sister in Christ and I love that! I love your family and I don’t even know you. God is good and he hears your/our petition.

    Lord tonight I pray for sleep. I pray for strength for Karen and that you would guard little Fiala from whatever is attacking her body. I pray Karen would feel your peace and know that she is doing the best job she can and her little girl is in the hands of the Great Physician. Lord heal her in Jesus name! We glorify you and praise you for the miracles you have already done through this family and their faithfulness to you! Amen.

  8. Karen,

    my companion on all things allergy and baby-grief…

    I feel for you! I am now off of all grain. and a billion other things like soy and milk. but this past Saturday Ven was uncomfortable… a lot. I ate very well. and last night i had beans and chicken. this morning was fine but this afternoon he fussed the whole time. ugh. so now I wonder if beans (even soaked beans) are not good for him. he fusses so much lately. and has explosive painful poops. it beaks my heart… and my goodness I am totally up for doing all the work and staying off of food – but just like you, it’s impossible trying to stay off of food when I don’t even know what’s causing it. it stresses me out so badly.

    my sympathies. no…. my empathies! in the biggest of ways.

  9. I stumbled onto your blog when searching for GFCF recipes. We spent nearly all of last winter dealing with various illnesses, so I have shared in a small fraction of the frustration that comes with your life being taken over by lack of health.

    I wanted to share this; a friend of mine told me a few months back of a treatment for allergies called NAET that cured her of NUMEROUS allergies. I guess the doctor who stumbled upon it was herself so allergic to so many things that all she could eat for YEARS was broccoli.

    My knowledge of it is very limited, so I’ll just let you google it, but I must warn you that it will seem VERY odd and outrageous. It is a combination of chiropractic care, acupressure, and kinetic alternative medicine. The words you will read that they use to explain it will seem crazy, perhaps even a bit new-age. I myself am a Christian who appreciates various things about mainstream and natural medicine (though I lean in the natural direction for preventative/quality of life care), and it seemed a bit unbelievable at first even to me. But as I have been learning more about how marvelously God made us and having experienced the benefits of chiropractic and kinetic medicine myself (my chiropractor has used an offshoot of NAET called NET with me), I just say that I think there is something to it. On one site I stumbled upon it had a directory of practitioner’s trained in it, so that might be a way of seeing if there’s one near you.

    So I just wanted to throw that out there, for what it’s worth, since your story reminded me of this and I didn’t want to be shy and withhold this information on the slight chance that it might be what could perhaps help your baby girl.

    You’re in my prayers…

  10. I am really sorry for all that you are going through. It breaks my heart to see so much suffering with you, Fiala and your family. There is a cure and I will pray that for Fiala and all the things you need and asked for, help, healing, wisdom. In Jesus.

  11. I came across your blog while searching for GF recipes. So sorry to hear about your trouble and i believe God will give you the answers you are looking for. I couldn’t help but notice that you said you were living off of corn, beans and pork. My advice is to stay away from the corn and especially the pork. I recommend you do a google research of all the disease, worms and other such things found in pork. Also a little over half of all corn is genetically modified meaning that it has been tampered with my man and is no longer of the original makeup God created. That being said, can really mess with a person’s insides. Just my 2 cents. Hope this was a help to you. Blessings!

    • I know a lot of people have trouble w/ pork, for one reason or another… but we like it here. 🙂 Plus, we can’t always afford beef. And, by the way, I took out corn a few days before we started the real total elimination diet, and Fiala hasn’t had a blow-out diarrhea since then! Could be coincidental, but I think not.

      Thanks for your comment!!!!

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