Monday, August 14, 2006

Next Stop: Crazy.

DH so sweetly got up with the girls this morning and fed them breakfast, as he often does, while I tried to gather myself together. I woke up in more pain and fatigue than usual, even though I'd gotten what should have been a good night's sleep. I can't take anything for my back (still hurting from the car accident) or anything else, because all the Advil, Tylenol, etc. contain corn or soy ingredients.

I hope someday Baby E will appreciate the sacrifices we're making for her.

Actually, scratch that. I think what I really hope is that she never truly understands how difficult her allergies are making life right now.

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We've just plain had a lot going on lately, and have all been overdoing it a bit lately. DH and I are both working hard. Even so, we're having trouble getting even the most important things done.

The girls, recovering from a week of illness, overstimulation, and little sleep, have been in fine form too.

Case in point: After several hours of not-so-patiently trying to settle arguments, break up fights and quell tantrums this morning, I decided to be proactive.

I marched toward the howling duet and made my announcement in a forced almost-cheery enthusiasm. "Guess what, girls? I have a surprise for you! If you hurry up and finish your chores you can do a fun project--making glitter pictures!"

AJ burst into fresh tears. "But I don't want to! I don't want to get my hands dirty." She sobbed massively and opted, instead, to go to bed--at 10:00 in the morning.

M&M wanted to do the craft, but lost the privilege by taking more than 25 minutes to get dressed, brush her teeth, pick up her dirty nightgown and a couple of toys, and make her bed.

By the time I'd finally wrangled the girls into doing their morning routines (AJ's "tiredness" didn't last long), Baby E was ready for a nap but refusing to go to sleep. I finally let her scream in her crib while the older girls played a computer game and I took a shower. She did fall asleep before I actually managed to get into the shower, so I was able to at least shampoo my hair with tar extract to quell the itching and burning from exczema without worrying about her.

This week's experiments have confirmed that Baby E is apparently not allergic to cow's milk (she did fine with both yogurt and ice cream), but I still am. Not only has it given me an itchy scalp, but it does seem that my pain, fatigue and general difficulty functioning are much worse when I consume dairy products. Dairy also seems to cause or exacerbate the unquenchable hunger that's so annoying. The failure of my dairy experiment really disappointing; especially since Baby E and I both seem to get uncomfortable intestinal symptoms with goat's milk, but not with organic additive-free cow's milk products.

I'm really excited that Baby E seems to do okay with cow's milk, though. It must have been either the pectin in the goat milk yogurt or the corn the goat had eaten that bothered her. I'm still trying to figure that out. Every time I test something new, I have to plan my day around it and be prepared to deal with a reaction.

I've been trying to make at least a few phone calls per day to manufacturers of food or medicine to try to find information about things Baby E can eat.

Even picking just the things that seem likely after scrutinizing the ingredients and researching on the web, I end up with maybe 1 out of every 5-10 attempts being actually confirmed as something that's probably safe for Baby E.

One of today's conversations was pretty standard: I called a company to ask about the xanthan gum and cellulose fiber in their brown rice bread. That one was a bit of a stretch, I knew, but I was hoping that they might have made an effort to make this special gluten-free supposedly-hypoallergenic bread without any of the more common allergens.

"Our xanthan gum does not have any corn in it," the customer service representative said with confidence. "It's not made from corn."

"Are you sure? Because xanthan gum is usually manufactured using corn derivatives."

"Xanthan gum isn't a corn product. I'm certain our xanthan gum does not contain any corn."

"Really?" I asked, "Xanthan gum isn't actually a corn product, but it's usually grown on corn syrup."

"Our xanthan gum is not grown on corn syrup."

"Wow, that's great. It must be grown on molasses or something like that, then? I know it can be grown on molasses, but it's not very common. I'm so glad--It's hard to find xanthan gum that's grown on something besides corn."

"It has to be grown on something? Isn't it just . . . gum from a xanthan tree or something?"

"No, it's an organism kind of similar to yeast, in a way." [Actually, it's a bacteria called Xanthonomonas campestris, usually responsible for the black mold on things like cauliflower, that creates a gummy substance in its external cell structure. But I didn't go into that much detail.] "It has to be grown on some kind of syrup, and then they separate it from the growth medium and dry it. But even after purification it will still have some traces of the corn syrup or whatever it was grown on."

"Oh."

I heard computer keys tapping.

"Uh. Um," she said. "This says it's also known as corn sugar gum."

"Yes, it is. That's because it's usually grown on corn sugar. But not always."

"Well, then I would think you probably shouldn't eat it, if it's called corn sugar gum. I wouldn't risk it if I were you."

"Uh, yeah. Thanks."

"What was the other thing you were wondering about? Cellulose fiber? Let me see what I can find out about that."

More key-tapping.

"Hmmm," she said, "My computer says that our cellulose fiber is made from fibrous plants. But it doesn't say what kind. Corn could definitely be a fibrous plant, couldn't it?"

"Yes, it certainly could. Is that all the information you're able to get on those ingredients?"

"Yes, that's all I can tell you. We buy these ingredients from suppliers, and we don't know what's in them. The suppliers may change, so it may even be different from one batch to another."

"Okay. Well, thanks anyway."

I also succeeded in convincing someone at an influential allergy information and lobbying group that, yes, Baby E probably does have a true corn allergy, and that corn allergy might not be quite as rare as commonly believed. She became quite interested and asked me to e-mail her the articles and studies I mentioned.

I'll bet I'd make a good lobbyist.

I also found out that Infants' Advil (the one and only brand of baby pain reliever/fever reducer that seems to be corn-free) contains soy. It figures.

I'm told by other allergy sufferers that my options are to look into suppositories (which may or may not work as well), or to have something custom-made by a compounding pharmacy. The compounding pharmacy option entails somehow finding such a pharmacy, getting a prescription from a doctor (because they can't specially compound even over-the-counter meds without a prescription), traveling to and from the pharmacy (which is probably going to be in the next state), paying the outrageously expensive price of $1 or more per dose, and hoping they've managed to actually avoid all the gazillion possible ingredients with hidden corn and/or soy derivatives.

We'll pretty much have to do that for every medication, OTC or prescription, or just do without. Doing without is what I've been doing for the most part.

It's not just medicines that are a problem. Trying to figure out what to eat for each meal is such a challenge. The things we can eat are, for the most part, very labor-intensive to prepare.

Today I started washing and cutting up fresh vegetables for dinner before lunchtime. We snacked on some of the sliced cabbage raw, and just as I was starting to cook some of it with some other veggies for the rest of lunch, the doorbell rang.

I rushed to get there ahead of M&M, calling, "Don't open the door! Stop! You don't ever open the door. Let me get it."

"I know, Mommy! I know that. I wasn't going to open it. I just want to see who it is when you get it."

It should have been my cue not to open the door when my query of "Who is it?" was answered only by silence.

I thought the UPS or FedEx carrier must have left a package, so I opened the door.

Immediately the tall youngish and somewhat scraggly-looking man who'd been standing halfway down the walk inserted himself in the crack between the door and the frame. I was afraid he'd try to shove his way right into the house. I stood my ground.

"Well, hello, ma'am, how are you today?"

"I'm very busy. I'm right in the middle of cooking lunch for my kids and I don't have time for this right now."

"This will only take a minute."

I spied the bottle in his hand. "Are you selling Advanage?"

It's a good product, but the salespeople tend to be pushy. I thought this one would be pretty easy to get rid of, though, since I could honestly say that I already had some.

"Why, yes, Ma'am, how did you know?"

"I bought some from the last guy who came around selling some about two years ago. He was out of spray bottles to dilute it in and was supposed to send me one, but it never came. I called and called the company off and on for about 6 months and still never got the sprayer I'd paid for."

"Well, we can sure get you an extra spray bottle, Ma'am. What kind did you buy? The citrus?"

"The plain kind. I don't like the citrus. I really don't have time for this, and I don't want any. I still have 3/4 of my bottle left and I'm not interested in buying more."

"Well, that's great, Ma'am. That means you're almost out of it. Now we have a new scent, this green apple."

"I don't like scented, I like the plain. I already have plenty and I don't want more."

"Oh, but now we have this new formula in the plain; it's much stronger. It'll even take out stains from your sharpie permanent marker. Look here; I'll show you."

He pulled out a rag and a sharpie, stepping back just a hair.

By this point AJ and M&M were enthralled, and AJ squeezed herself as close to the doorway as she could get around me.

She smiled at the man. "What's your name?"

"My name is Michael. What's yours?"

I had Baby E in one hand and the door in the other, so I didn't have a hand free to grab AJ. It all happened so fast.

"No!" I said to the man. "Please go away."

"My name is AJ. It's spelled [she spelled it]."

"Wow, you're smart, AJ. You're great. Gimme Five."

I interposed myself between them as they tried to smack their palms together. "AJ, get back in the house. NOW."

I stepped forward, planting my body squarely in the doorway, and stared the man down as he started into his sales pitch again. "I have food on the stove. I am not going to buy anything and I don't have time for this. Goodbye."

He didn't back down a bit. "Let me just show you this real quick. It will only take a minute." He continued rattling off his spiel, as fast as he could, while rubbing marker into his rag.

I contemplated slamming the door in his face. It would really have been in his face, too--I don't think I could have shut the door without hitting him. I felt so encroached on and violated. This man was in my space. He wouldn't stop, and he wouldn't go away. I felt about ready to scream. I was afraid he would try to push his way into the house if I stepped back to shut the door.

I'm sure it didn't help that last night I had a marathon nightmare about an intruder breaking down the front door and getting into the house while I was trying unsuccessfully to trigger the alarm system and hide the kids. (Of course, the dream took place at my childhood home which had a front door with a bigger window in it, but that's beside the point.) We really, really need a peephole in our front door so I don't get into these situations in the first place.

I leaned forward and glared at him, forcing him to look me in the eye. Over his monologue, I chanted, "I am not interested. I am not interested. I AM NOT INTERESTED!!! I have food on the stove. I am not going to stand here talking to you while my house burns down. Go. away. NOW! Goodbye."

And I shut the door.

He did not try to shove the door back open, or push his way inside, as I feared he might. He said "okay" in a rather huffy voice.

And he left.

I was shaking as I went back to my kitchen. Every nerve was on edge, every muscle ready for "fight or flight." I hadn't had to defend my children and my home from someone trying to push his way inside. He'd stayed on the doorstep, and then had left. I had triumphed this time. But I felt the danger. I mentally flogged myself for opening the door at all.

Then I turned to AJ. "You do NOT talk to people like that!" I told her, my voice shaking with fear and anger. "Just because somebody is at the door does not mean they're our friend. That was not a nice man. He was rude, and pushy, and he did not go away when I asked him to. You should not have been standing there telling him your name and all about you! You do NOT talk to people like that. Didn't you hear me saying, 'I am not interested, I do not want to talk to you, go away?!?!'"

No, she hadn't. "But he was a nice man, Mommy. His name was Michael. He told me his name. He was nice."

"No, he was not nice! He was a stranger, and he was NOT a nice man. He was trying to sell us something. He would not go away when I asked him to. You need to pay attention! You do not talk to strangers. If I'm standing there telling someone to leave, you stay away from the door and do not talk to the person. Don't ever do that, ever again. You stay back from the door and don't talk to someone unless I tell you that you can, even if I'm with you. We shouldn't have opened the door at all. That was not someone we knew, and he was not our friend."

I checked and double-checked the lock on the door. It took a while before I stopped listening for someone trying the latch.

Over the course of the afternoon I spent every possible moment between caring for the kids washing and chopping green and purple cabbage, carrots, celery, broccoli, mushrooms, parsely and garlic for dinner. I put all the veggies into the steamer with some chopped onions, crumbled bacon and some cooked hamburger, and sprinkled it all with some salt.

It had been a lot of work, but it was worth it for a nutritious and allergy-safe supper. It was starting to smell good.

Then the water boiled dry in the steamer. I had filled the water as full as possible, but apparently if you cook something for more than 5 minutes in this double-boiler-style stovetop steamer, it runs out of water. By the time I realized what had happened, the food was literally smoked instead of steamed.

I wanted to cry. The kids were hungry and whining. Baby E was fussing, as she'd been doing much of the day. DH was exhausted and hugry too. He was no more functional, physically or emotionally, than I was.

Dinner was ruined. I tried to feed it to the kids, but they cried and complained. Even DH said it all tasted like smoke. It really wasn't edible.

I tried to explain why I was fighting back tears: "I'm so sorry. Do you have any idea how many hours I spent washing and cutting up all those vegetables? All that work, gone up in smoke. I ruined dinner. I'm sorry."

So I made waffles. It took a long time to gather all the ingredients and mix them up, then even longer to bake them.

Halfway through, I realized that big chunks of black non-stick coating were coming off one of the two waffle irons and sticking to the waffles. Now I was poisoning my family.

I told DH, "The non-stick coating is coming off this round iron and getting in the waffles."

"Oh. Okay," he said. Then he picked up one of the round waffles, broke it in half, and gave it to the kids, who immediately started devouring it.

I manged to keep my cool. "In other words," I said in an egaggeratedly calm, but definitely edgy, voice, "don't feed them to the kids!"

"Oh!" He took the pieces of waffle away from the kids, who started howling again. "I'm sorry; I didn't understand. I didn't realise you meant not to give them to the kids."

"Okay," I said, "I clarified." I bit my lip and continued cooking.

By this point Baby E had been fussing in her high chair for a long time. I was trying to bake waffles for the girls and DH while at the same time mixing up hypoallergenic pancakes for Baby E and myself. She escalated into a scream. And screamed, and screamed.

"I can't take her right now," I told DH. "I'm in the middle of trying to make dinner.

"Okay," he said. And continued loading the dishwasher while Baby E screamed.

"Is there a reason you can't pick her up?" I asked in a strained voice, "Because she's been screaming for a long time."

He took her out of the high chair and left the room to gather himself together while I continued cooking pancakes and waffles and feeding the older girls.

Finally the kids were done eating. I cleared the table and fed Baby E, cooking the rest of the pancake batter while DH went up to start getting the kids ready for bed. I got to eat a few pancakes while Baby E tried to pull the plate off the table with her foot. The Trader Joe's raspberry applesauce made the meal fabulous. Wow, that stuff is good. It tastes just like fresh fruit with no additives, because that's what it is.

When I went up to check on DH and the kids, I found DH kneeling by our bed, head in his hands, looking completely drained. He was praying. I left him alone. The kids had their pajamas on, so I gave them some chocolate rice milk and then sent them up to finish getting ready for bed.

When I went upstairs again, DH was sorting toys and cleaning up in the playroom while helping the kids get ready for bed. I fed Baby E. She fell asleep while nursing, much earlier than normal. When I couldn't wake her to feed on the other side, I went with relief to lay her in the crib.

Apparently DH had changed the burnt-out lightbulb in Baby E's room. How nice. But there were lightbulbs and carboard boxes scattered in Baby E's crib. I couldn't move them while holding her without waking her up.

I went quietly to the playroom door and tried to get DH's attention. All my wild gestures and the jerks of my head toward Baby E's room did nothing. He stared at me like I was crazy (well, yes, I know I had long-ago reached crazy, but that's not the point).

He said, "What? I can't hear you? What do you want?"

"There are light bulbs in the baby's crib," I said softly.

"What?"

"There are light bulbs in the baby's crib! I need your help to move them."

Baby E's eyes popped open at the sound. I frantically shushed and rocked her, and they drooped shut again.

DH removed the light bulbs and raised the side of the crib.

"It would have been easier to lay her down with the side down," I whispered, reaching to lay her down.

He reached under my arm and squeaked the side down again as I shook my head to try to stop him. Now that I had her halfway in the crib, things had to be handled delicately to keep from waking her.

Poor guy; I couldn't make clear what I wanted, and he was trying so hard to help. I laid her down as he raised the side again.

She woke up.

I picked her up and nursed her some more.

She finally fell asleep again, and I laid her down, only to have her wake up again.

I didn't have the energy to spend another hour or two in her room trying to calm her as I've ended up doing a lot lately. I was worn to a frazzle, and so was DH. So I walked out and closed the door while she screamed. And screamed. And screamed.

I felt like a murderer, especially after letting her cry it out at nap time and last night too, but there was no way I was going back in there even just to talk to her at the moment. I just couldn't. I walked downstairs and DH asked me how it was going. Through tears, I told him that I couldn't get Baby E to sleep.

After what seemed like 20 minutes, but was probably closer to 10, she cried herself to sleep.

I'm going to bed now, too.

Tomorrow is a new day, as Anne of Green Gables would say, with no mistakes in it--yet.

6 Comments:

Blogger ccw said...

(((hugs)))

7:13 AM  
Blogger Liz Miller said...

Big hugs, my dear. You do a good job of parenting your children. Yesterday just got away from you is all.

I've found that a "No Soliciting" sign by the doorbell works wonders at keeping the salespeople away. Just let your neighbors know that you don't mean their girls and boys on fund-raisers.

And may I also suggest a plug-in, counter-top steamer? We've found it to be very handy and doesn't have the boil-out issues of stove-top steamers.

More hugs and lots of love.

7:23 AM  
Blogger Phantom Scribbler said...

{{{{{PK}}}}}}

I'm sorry it isn't Wednesday already.

8:01 AM  
Blogger Heather said...

Ya know, if the full moon hadn't been last week, I'd blame it on that, b/c dh and I have had similar interactions of late. You were much kinder than I, lol.

Actually, scratch that. I think what I really hope is that she never truly understands how difficult her allergies are making life right now.
Right, b/c if she truly does understand, that means she's living it with her own baby...and I know you would never want that!

(hugs)
P.s. I tagged you for a meme if you're up for it :)

9:42 AM  
Blogger Kevin said...

Wow. I pray tomorrow is better. As far as I can tell, despite your distress, you've handled the day beautifully.

Ah, the xanthan tree. Thanks for teaching me about xanthan gum. It's amazing how people can be so confident in their ignorance. I suspect your gently informative coaxing has awoken many people, and many others will benefit. You would make a good lobbyist, amongst many other jobs.

Non-stick pans, et alii, are starting to worry me, too. I notice the coating disappear. Where'd it go? My intestines, perhaps? Of course, it's carcinogenic and the instructions always say that you're not supposed to heat it passed medium. Medium? How were waffles made before non-stick waffle irons?

Good writing. I was on edge while I read your interaction with that salesman. I hope DH is doing well. God bless you all.

11:21 PM  
Blogger Bridget said...

big hugs- yowch!

1:28 PM  

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