The cardiologist, Whole Foods, tears, and dinner

I had a cardiologist appointment yesterday, as a follow up to the echocardiogram I had, plus my wearing a 30 day event/loop recorder (which I actually only wore for 22 days).

Structurally, my heart is SOUND.  That is a great relief.  He listened to my heart again from the front and the back, in many different places, cocking his head as he said, “It still sounds like you have mitral valve prolapse.”  But the echo came back normal, so he’s trusting that.  He said I likely do have Wolff Parkinson White syndrome (five nerves going into my heart, instead of four), but right now, though that causes a consistently electrically-odd electrocardiogram pattern, it’s only causing my heart to do a variety of weird things 1-2x/day, according to the event monitor.  He said that I had three options:

  1. Do nothing for now.
  2. Try medication to regulate my heart
  3. Have surgery to cauterize the offending extra nerve in my heart.

He suggested option #1, with which I heartily agreed.  Heartily!  Hah.  No pun intended.

He does want me to keep a little notebook journal for the next six months, and document whenever I feel anything weird, and what I was doing at the time, etc.  Oddly enough, at least half of the “events” my heart had was when I was sleeping.  But, I’ll give it a go.

On the way home, I stopped at Whole Foods to buy some grains that are not wheat, rye, barley, oats, rice, or sorghum.  Since either Fiala or I can’t have those — plus no potatoes — I must find some alternative carb/starch for our meals, or we’ll be eating corn with every meal.  Whole Foods is pricey and distant from my house, but I know that they have a great bulk department… so, I bought raw buckwheat groats, roasted buckwheat, amaranth, hulled millet, and polenta.  I also bought some way-expensive roast beef from the deli, but I knew it was safe because the girl who roasted it that morning — seasoned with just salt and pepper — was the one who sliced it for me, as well.  In many, many ways, I love Whole Foods, but we would go broke if it was right around the corner.

As Fiala (who had accompanied me to the doctor and the store) and I drove home, I cried.  I don’t know if I felt more sorry for her, or for myself, which made me cry more, that I could be so self-centered to worry about what in the world I was going to eat, and boo-hooing that Martin and the other kids were at home eating gluten-free Pei Wei, and my back was hurting so bad (I threw it out on Monday — a different story altogether), and I was so tired, and all I wanted was to go home and lay down, but I knew I had a good hour on my feet ahead of me, and my baby’s skin and health is in such shaky condition…  Yes, we have hope for her future, and that is very gratifying.  However, in the meantime, we have days or weeks or whatever, while she is still in great discomfort, risk for infection, etc…  And, the last couple of days, a yeast-based infection EXPLODED in her diaper area, and though I’m treating that with miconazole, and having her spend as much time bare or with an uncovered cloth diaper (plus treating her with aloe vera gel mixed with the contents of a probiotic capsule — don’t know if that will do any good on the outside, but I’m desperate) she is beet red from her belly button around to the top of her bum.  Poor baby.  😦

I got home, and pulled out some beef broth from the freezer.  Unwisely, I had put it in a gallon Ziploc freezer bag, so it took forever to thaw in the microwave.  But, I reflected that, when I made it, two months ago, I thought, “Well, I wish I had flavored this with garlic and veggies… too bad it’s just plain from boiled bones.”  Hah!  God provides and prepares, even when we’re not aware of it.  It is perfect for what I need now!  So, I made buckwheat (you make it like rice — double the broth to the grain) with my “regrettably” seasonless beef broth, paprika, dry mustard, red pepper, parsley, and salt.  I also steamed some green beans, and ate some of my roast beef.  The buckwheat was GREAT!  I didn’t miss the garlic at all.

In fact, I’m eating some buckwheat now.  My 3yo daughter Audrey just came by to compel me to share with her whatever was in my bowl.  She sniffed, and said accusingly, “That’s dinner!” and walked away, like I purposefully was eating “dinner” at eleven in the morning just to twerk her off.  😀

Edited to add:  P.S.  I filled the prescription for Augmentin, but for now, I’m not giving it to her.  Just being able to bathe her again (we couldn’t from Mon-Thurs morning), plus putting the triamcinolone (steroid cream — not desirable, but better than another 10 days on abx), plus doing the wet/dry wraps has already greatly improved her legs.  I will keep a close eye out for infection, but unless they’re truly infected, I don’t want to use more abx, especially since she’s having such a problem with yeast in her diaper area.  Hmmm… I think I’ll try the probiotics in a CUP with water, as she won’t drink out of a bottle, and I’ve only let her toy with a “real” cup, up to now.  Maybe we can get some in her system SOMEHOW.  Or, maybe I’ll mix it with water and put it in a syringe — not an injection syringe, just a dosing syringe…  Why didn’t I think of this before?

About Karen Joy

I'm a partially-homeschooling mother of six -- 3 boys ages 19, 17 and 15 years old, and three girls: 11, 8, and 3. I like birding, reading, writing, organic gardening, singing, playing guitar, hiking, the outdoors, and books. I very casually lead a very large group of homeschooling families in the Phoenix area. 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 August 21, 2009, in Allergies, Babies, Celiac Disease, Digestive Woes, Family, gluten-free, Medical Stuff, Motherhood, Sad Things, Shopping, The Kids, Whining. Bookmark the permalink. 13 Comments.

  1. Quinoa is a great grain, too!

  2. have you tried quinoa? they dont usually have it in bulk, but in the boxes and sometimes bags…. but they also usually have plain noodles made with it and such…. and no gluten.

    • I do have quinoa in my pantry already — whole grain, rolled grain, and flour! However, I rather OD’ed on it a couple of years ago. I put quinoa in EVERYTHING, and got kind of turned off by the taste, all at once. So, when I use it, I have to add a lot of other stuff to it, so it doesn’t taste so strong. I haven’t tried the pasta, though… have you?

  3. Wow, that’s really something about your heart! I’m glad the doc gave you a mostly clean bill of health. What was it like to wear a heart monitor for 22 days?? I had to wear one for 24 hours a couple of times, and I found it nerve wracking.

    Ever since I read your post mentioning PVCs, I’ve been thinking about seeing a cardiologist. I’ve been referred for a Holter monitor twice, but I haven’t actually talked to a cardiologist.

    Feeding our children, something that is so simple in some families, can certainly be an emotional experience for us, can’t it?

  4. Well, it was crazy-annoying to wear it that long. I was supposed to wear it for 30 days. I couldn’t hack it. The electrodes caused me to break out — on my entire chest — looked like acne, and itched like crazy. Then, I got the “hypoallergenic” kind, and those “just” created itchy, dry, red patches where they’d been placed. Plus, you’re supposed to wear it for everything, 24 hrs a day. My husband… mmm… wasn’t fond of those instructions. I kept thinking, “I’ll get used to it…” But, no. I never did. I was aware of it as long as I was awake. PLUS, you have to choose clothing that hides the electrodes, wires, and little monitor-thingie. Even though the monitor was only the size of a deck of cards or so, it was difficult to find clothing that obscured everything.

    Does a Holter monitor always have five electrodes? Mine only had two. I *CANNOT IMAGINE* having to wear one w/ five electrodes for any length of time. Ugh. Double ugh.

  5. If it makes you feel better, i can’t tolerate garlic. I used to be able to, but then when i was trying to stave off what i thought was a cold, using raw garlic, i got sick to my stomach and, well, now garlic is off the menu.

    So i cook everything without garlic. It tastes fine. 🙂 If you can tolerate onions, then you’re good to go.

    • So, Karen… what all can’t you eat?

      • Here’s the whole list (which makes my son say “My poor old mom”):

        wheat and all gluten-containing grains (oats are sometimes tolerated)

        dairy (makes my psoriasis flare and gives me headaches)



        green beans–and i’ve since determined that other legumes are problematic, including peanuts


        And because i have a severe mold allergy, i have read i should steer clear of foods that may contain mold, but when i read that list, and realize how long it is, I kind of want to just live in denial. So I do.

        • Your kind son!! We had lunch a short time ago; I ate leftovers from last night’s dinner, as I couldn’t eat the g.f. bread (rice) nor the lunchmeat (garlic) that the kids were having. And my 10yo turns to me and says, “May I please have some of your chicken?” Maybe I shouldn’t have gotten upset, but I told him that since he can eat anything he wants, and there are so few things I can eat now, what he did was like having $100 in his pocket and politely asking a poor person for their last dollar!! 😮

          • oh yeah, and I am constantly explaining to my four year old, who covets everybody else’s food–don’t you hate that, when you sit down and they perk up when they see your plate and that it’s got different food on it?–that Mommy is eating these crackers with her tuna salad because she cannot have a nice grilled cheese sandwich the way you lucky, lucky boys can.

  6. I love you Karen. Here is a hug. Kathy

  7. sometimes I think our lives are way too similar!

    ok about the syringe comment – I don’t think anyone was wondering if you were planing on injecting the probiotics with a needle directly into her system lol… that struck me as funny.

    and also… I really really appreciated your last comment on my blog. I’m so busy lately i don’t blog much, but I’ve been wanting to tell you that.

  8. I too would go broke if there was a Whole Foods near me! Luckily I have an ocean between me and the nearest one. I went to the one in Boca in March when I was out in Florida, which is the biggest in the State I think and it was like a sight-seeing trip. My boyfriend got sick of waiting for me to squint at packages I think and I still managed to buy gluten free bread that had milk powder in it (my pet hate).

    Augmentin is the nastiest anti-biotic in my opinion (and I got put on a lot of them when I had Mono the first time, which i think stuffed up more health). I wouldn’t ever take it again. Then again, I hate anti-biotics generally now!

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