Posted in all about the family, Topical steroid withdrawal, Uncategorized

Here we go again…

I almost deleted this whole blog to start fresh because so much has changed, but I decided to leave the old. When I left off, we were struggling with Elaina (aka Mickey Mouse) and her skin. So much has happened. Life changing and eye opening stuff.

We thought her “eczema” was the result of food allergies. Next we were told she was also allergic or had sun sensitivities (polymorphic light eruptions). Then we were told Lupus. Finally we were told she had “an as of yet unnamed autoimmune disease). That day in the dermatologist office of our semi local children’s hospital is the day I had enough. We had been through every diet change and lifestyle change imaginable and we still did not have answers or relief. The dermatologist increased the potency of her topical steroids and told me to use them “as needed”. I explained that that would mean using them against manufacturer instructions because we would never be able to take the required amount of time off. The steroids would always be being used somewhere on her body….arms this week and feet the next. The dermatologist looked me right in the eye and said that was ok and we were being referred to a rheumatologist. I knew that this was actually NOT ok.

My husband left for Korea very soon after that and her “eczema” was out of control. She was red all over. Her skin was the angriest I had ever seen. That’s the way us southern women talk about things that are red, inflamed, and raw. We call it angry. It’s a few steps past irritated. Anyhow, nothing helped really. The true breaking point was late at night. Elaina went to get into the shower and she just screamed. “It burns!” She was hysterical and inconsolable from the pain of just water touching her skin. That was the first horrible night of many that would come.

I began with a Google search. “Red face eczema burn”. That took me to a message board for skin conditions. I poured her symptoms out there and a responder told me to look at ITSAN.org. She had every single symptom of topical steroid addiction…also known as red skin syndrome. I devoured information from ITSAN and other sources all over the web. There were two doctors in particular that talked at great length about this condition. Dr. Marvin Rapaport in California and Dr. Fukaya in Japan.

At this time, Red Skin Syndrome/Topical Steroid Addiction/Steroid Induced Eczema/Topical Steroid Withdrawal were not widely medically recognized. The only cure is total cessation of all steroids. There are some treatments for the horrifying symptoms like muscle spasms and insomnia that can improve comfort through the lengthy withdrawal, but some do not even find those helpful. You also need a medical doctor who agrees with the diagnosis in order to get any assistance. RSS/TSA were not recognized by the American Academy of Dermatology until December 2014…four months after Elaina began withdrawal.

It was an exceptionally trying time for all of us emotionally as we rallied around her in love and prayer. We catered to her comfort for months as she fought her way through the symptoms. We tried every therapy within reach to increase her comfort and speed healing. She saw several alternative medicine practitioners who were able to help boost her immune system and increase her comfort through the healing.

At four months TSW (how we describe the process….number of months into withdrawal) she gave up bathing completely and did not resume bathing until month 11. Months 3-11 of TSW were beyond trying. She was beet red, peeling, flaking and oozing. Interstitial fluid wept through her skin on her arms, legs, and face at times. We kept her wrapped in layers of gauze and soothing balms. Around month 8 she began to grow again and to play again. Her physical symptoms had resolved around 75%. She has had other “flares” of symptoms every few months since then, but nothing that even remotely compares to those first months.

She’s now 22 and a half months TSW and about 95% healed. Minor rash on her toes, ankles, and knees with the occasional splotch elsewhere. She currently has a quarter sized patch on her cheek. Her skin no longer looks red. She is growing at a normal rate (though the steroids have left her smaller than her identical twin). She runs, plays, and swims like everyone else. She is catching up on her school work (praise God that He put us on a path to homeschool 15 years ago before we ever knew how much we would need it).

And…she is no longer bothered by the sun.

If you have worsening eczema or out of control eczema, please visit ITSAN.org.

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Posted in all about the family, Uncategorized

Pumpkins, cukes, and are Bob and Larry cannibals?

Deployment update:  I’ve made it through my first “illness” since he left.

People wonder what happens when mommy goes down when daddy is gone.  Hopefully the kids can understand the concept of “mommy doesn’t feel good”.  I am crazy blessed to have wonderful children and an awesome teenager.  My kids have big hearts.  Mommy’s feet got rubbed and her hair got brushed by the little ones.  Alex was awesome at helping to keep his sisters at bay when I did fall asleep on the couch.  He also fed his 3 sisters breakfast and kept them busy by allowing them to watch him play video games while I slept in.  LOL  Yeah, not kidding.  I walked into his room this morning and all 3 of his sisters are piled up in his bed with jaws unhinged and hanging agape in awe at whatever gore filled video game he may have been playing.  Ok probably not gory, but definitely a first person shooter game.  They adore their brother and God only knows just how long they would sit there just to be there with him in the sacred den that girls are not usually allowed to enter.  So today I have felt much better.

So much better, in fact, that I’m cooking up the pumpkins (finally) that Amy gave me from her garden.  I’m going to turn them into pancake batter before I go to bed.  It can sit in the fridge and be ready to go for breakfast in the morning.  Lots of God’s bounty has come from the gardens this year despite the drought.  Amy has given me zucchini and pumpkins.  My own garden was late to be planted, but still has been producing.  I’ve gotten some delicious yellow squash, zucchini, and lots of cucumbers.  One lonely tomato sits on the vine, still green though.  Of course the presence of cucumbers and a tomato in the garden just screams “SALAD” to an adult.  To my girls, however, it makes them question if Bob and Larry eat salad, and if they do doesn’t that make them cannibals???

Posted in all about the family, homemaking

Motivation, egg timers, and malarkey…

So time ticks away on us.  Counting down to an event, a year, an age, a season, or whatever…it’s all the same.  Eventually it becomes NOW.  I am counting down to a deployment.  I haven’t blogged much because I just simply am not allowed to talk about 95% of it.  But my “honey do” list has an almost finite point.  We’re also counting down to my mom visiting.  So there’s a list of things I need to get finished before she comes.  There is a list of things he needs to get finished before he deploys and time is a-ticking.   Anyhow, I’ve been down.  I’ve taken on a lot to try and offset my being down.  My house has suffered.  Ever since we purchased this home I’ve been trying to get and stay organized.  The snowball of chores really hit this week.  Laundry to be folded.  Open and scattered boxes of clothes in my daughters’ room.  (I take whatever free or sale clothing and accessories I can get when they come available to me, then box them up by size and season.  This is the only way I can keep all my urchins in clothes.)  There is completed and half completed paperwork stacked on my coffee table for Girl Scouts, summer camp, homeschool lesson plans etc close to 8 inches high.  There are 2 boxes and a stack of stuff to be put on ebay in my living room.  I’m not even going to touch on the office/sewing room! LOL  Oh and my bedroom…how many parents suffer from the  unfinished or no time to clean master bedroom syndrome?  Me, me, me!  It looks like a hurricane of clothing.  Clothes get folded and stacked but never put away.  I’m out of places to stack them!  I’m certain I’d have plenty to wear if I could just FIND IT!  You get the point.  I’ve got quite a list of chores that I want to finish ASAP.  I can’t stand it anymore.  Of course that doesn’t mean I’m motivated.  LOL  So today I used the egg timer.  I told myself that I only had to clean for 15 minutes at a time, maybe 15 minutes out of every hour.  It’s an egg-cellent trick.  😉  What happens, at least for me, is that I forget I set a timer.  By the time it goes off, I’m busy in the middle of something, on a roll, and don’t want to stop.  So I keep going.  I actually knocked out quite a bit today.  The girls’ room is now tidy, clothing sorted and put away with two boxes of clothes to donate or garage sale.  On top of that I got some of the usual basic stuff done (some laundry, some dishes).  Oh and I wiped down my washer and dryer.  Seriously, when does anyone, in this world, EVER find time to do THAT?  Next on my list to finish this week is my own bedroom.  After that will be the office/sewing room.  Stay tuned…

Now for the malarkey.  Do you ever wonder about other people’s lives?  I see people all the time who lead such a different life that I can’t even imagine it.  Facebook and Twitter are places where you’ll really see a difference.  Posts like “gonna get my drink on”, angry posts telling someone off, posts with such starkly different political or moral standpoints…they’re all like tiny windows that don’t give you the whole picture but still make you shake your head.  I rarely respond.  My mind has a million and one things I’d like to say, but I know these people won’t be receptive.  What they want is people who AGREE with them, not people who will be honest with them.  They don’t care if you have love for them.  In their opinion, if you can’t agree with them then you are way off.   It makes me sad.

Posted in all about the family, homemaking, recipes, Uncategorized

grrrr argh grumble blah


Originally uploaded by nehifamily

So today I noticed the toy room looked like a tornado hit it. I demanded…repeatedly…over the next 2 hour period…that it get cleaned by my three completely innocent and angelic daughters. It appeared to be cleaned so I let it go. When bed time rolls around I tackled changing the sheets on their beds and decided this is the time to put on the new zippered mattress protectors. Believe it or not, until now I had covered the mattresses with flannel backed vinyl table cloths under the fitted sheet. It had worked to protect the mattress from accidents but they were green…and had started to change the sheets to green. Anyhow so I found some REAL mattress protectors at the store and got them. So I’m trying to wrestle these mattresses into these covers. These mattresses are great quality with the boards built into the bottoms of them. So they’re also stiff and heavy. Thankfully my son rushed to help. BUT it allowed me to see the chaos that lives UNDER their beds!

Then I saw what lives behind their dressers…and between the bed and the wall…and behind all the doors…

Which got me to look around and see what was stashed behind the hamper…and each of their toy bins…and under the book shelves…and behind the TV and computer desk…and the poor guinea pig didn’t want Barbies in his cage, I’m sure.

It was one of those moments when I wished I’d had a rake for INSIDE USE. It took 2 hours past their bedtime, but the mess is cleaned. I thought for sure that with all the extra cleaning and past their bed time, plus they’re still sick, that they’d hit their freshly made beds and just crash. Yeah, silly me.

M actually came to me to tell me she’d hurt her nose…on the window. Past the point of exasperation here, I told her “too bad, so sad…because if she’d been doing what she was supposed to (laying in bed trying to go to sleep) then her nose wouldn’t have been anywhere near a window”

So now I look out at what I needed to get accomplished tonight, I know it’s simply not going to happen. My kitchen is a wreck. I still have the remnants of Chinese noodles to put away…the produce. The rest will just have to wait until tomorrow. I should have time because I can’t go to church. The girls are still snotting and coughing and so they can’t go. I feel bad because we haven’t been in 6 weeks or so. Someone is always sick. Right now my mister is off being a soldier and doing what they do (and that’s all I got to say about that ~forrest gump style)…so it’s just me and the kids. So I can’t even split the difference and sick people stay home and everyone else goes. Anyhow, so we’ll be working on getting the house cleaned tomorrow…laundry folded…kitchen cleaned.

I’m doing my best here. I haven’t even had a chance to really miss Rob except in not sleeping. I haven’t slept good in a few nights. Night 1 I didn’t sleep at all. Not a wink. It’s getting better. This is normal, but I’m tired. I’m too tired to miss him really, yet. There is going to come a moment that I’m going to break and the tears will come and I’ll wonder how on earth I’m going to be able to keep going.

I wish he’d been here for dinner tonight. He would have loved it. We had dinner at Genghis Grill before he took off and he loved it. It really got me to craving those fat Asian noodles with veggies. I think the process there really helped me be able to put it together at home. I prepped all my veggies first. I got to use my Julienne peeler tool thingy and did 2 large carrots with that…then with a knife sliced up 1/4 of a green cabbage really fine, cut up a fist full of green onions in 2 inch long pieces, and about 2 cups of pea pods, and 1/2 lb sliced mushrooms…All that went into the skillet with 4 large cloves of garlic, diced, 1 tsp of 5 spice powder, 1/2 tsp roasted ginger powder, 1 tsp Cajun seasoning (I know it’s a weird choice, but it worked). Then when the cabbage wilted down I added a whole pack of imitation crab (it’s really flavored fish and not a bad choice), a large can of bamboo shoots sliced, and two really large fist fulls of bean sprouts. The noodles were in the microwave with just enough water to season them. When I added them, there was no liquid left and I topped it all with 1/4 cup bottled general tso sauce, 1/8 cup oyster sauce, 1/8 cup garlic chili sauce. When it was finished I topped it with 1/4 cup roasted sesame seeds.

Posted in all about the family

My invisible darling…

So today the hubby had two ceiling fans to hang, one of which belongs in the toy room.  So I told him I’d take all 3 girls to Target in search of bean bag chairs and then swing by HomeDepot for some stain.  This way they would get out of the house, have to do a lot of walking, and they would also be out of his way.  This is a big thing because, honestly, I rarely take all my girls out by myself.  The twins are 4 and M is 6.  It can be a bit of an undertaking.  Anyhow, Target was sold out of bean bag chairs so they managed to talk me into rain boots, rain coats, and crocs.  The hubby and I just decided this morning that their old boots were completely trashed and weren’t salvageable.  So we checked out and then I pushed the cart up to the Starbucks after my fix like a drunk with the shakes.  The twins were strapped into the cart but I’m just talking away “you girls want a vanilla bean creme?”  “M?  how about you?”  “M????”  She is no where to be seen.  Of course I start yelling for her thinking she’s behind someone nearby.  Nope.  Then I see her through the glass outside the store!  She had followed someone in a similar sweater to mine out of the store and was wondering around after realising what went wrong.  I ran out of the store (twins still in my line of sight but in the Starbucks).  I was so mad, but then I noticed how she was just a little too white in the face.  When I hugged her she completely broke down crying. 

So to all those moms out there who know what it’s like to have a “worst mommy in the world” feeling, you are not alone.

Posted in all about the family, frugal tips, recipes

Pizza crust


P2170004

Originally uploaded by nehifamily

So tonight the hubby and I have a thing to do. The kids still need dinner, right? I prefer to do something that they won’t complain about when my 16 yr old son has to be in charge. Tonight it will be pizza.

The dough was 2 packets of yeast combined with 2tbsp sugar and 2 cups warm water. Stir until dissolved and let sit 5 minutes. Then I dumped in 4 tbsp olive oil 1 tsp salt and 6 cups flour into the mixer with the yeast water. I used the dough hook on my kitchenaid and mixed well. I hit the preheat on the oven for 350. Then I turned it out onto a lightly floured counter…kneaded it 4-5 turns until smooth. I sprayed a mixing bowl with olive oil and plopped the dough into to it. Then I turned the oven off. I was basically just creating a warm environment for the dough to rise. I covered the dish with clear wrap and popped it into the oven for 2 hours-ish. Until it doubles.

Then I punched the dough and cut it into 3. Preheat oven to 400. I mashed out each section onto a stone pan.

In a prep bowl I combined spaghetti seasoning and olive oil. I brushed each crust with this and baked it 3-5 minutes.

Now my crusts get to sit on top of the stove until dinner time, when I will top them and bake them until melty and golden. But if you don’t want them tonight, after this pre baking and cooling, they can be wrapped in clear wrap and then in foil and frozen for future use.

Posted in all about the family, homemaking, Products I'm trying, Uncategorized

My Valentine with my Valentine’s gift…


Grill

Originally uploaded by nehifamily

So the hubby got me exactly what I wanted. Jewlery? Nope, not me. He’s given jewelery before and I loved it, but I’m a practical person. A gift that makes my life easier is what rocks. So he spent today assembling my new BBQ!!! It’s a Triton Outdoor Gourmet grill with 3 gas burners and a side burner, a charcoal grill, and a side fire box…all with cast iron cooking grates.

I will be breaking this sucker in tomorrow! I’m so looking forward to a beautiful Spring and Summer of cooking out on this. BBQ chicken, country style pork ribs, brisket, grilled corn, grilled watermelon, fire roasting fresh garden veggies for canning in pasta sauce, roasted spiced apples….suddenly I feel like “Bubba” in Forest Gump….”shrimp stew…deep fried shrimp…shrimp pasta…” LMAO