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.

Posted in Uncategorized

Atlas

Sometimes I feel the weight of the world on my shoulders. I don’t want to take Mickey Mouse to the dermatologist tomorrow. I don’t want to do anymore allergist visits. I just want my baby to be able to go outside and play like a normal child without breaking out in an itchy rash.

I find myself wondering what good it does to run tests to figure out what she’s allergic to if just breathing air or being exposed to the sun at all causes it.

This is just me having a pity party, but sometimes I just want to throw myself down and have a fit like a two year old. “I want! I want! I want!” Only, the thing I want is for my child to be healthy and be able to be a child.

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Posted in Uncategorized

An update on our allergy situation (and stress)

After 3 months of being gluten and dairy free, we were able to confirm that Micky Mouse can not have eggs (even in baked goods).  Add that to the already confirmed list of peanuts and corn.  We reintroduced wheat with no allergic reaction.  Yay!  My grocery budget is relieved.  

We will be trying dairy this week.  This is a process we’re going through because doctors have assured me that the elimination test is the truest test.  

Doctors speculate that her most troublesome allergies are environmental.  She really can’t go outside to play here for even 15-20 minutes without breaking out with eczema and a photo-reactive rash like PMLE.  After that, it takes almost a week to knock the rash out.  

Going gluten-free was especially difficult because we confirmed she couldn’t have eggs.  Gluten-free recipes widely call for eggs, corn, or nuts.  Then there was the hidden allergens like xanthan gum (which I only recently found out is a corn derivative).

Frosting on top o the stressful cake was me beginning IV iron treatments.  Yes, that’s a ball of fun.  

Stress.  Yes, that’s a whole other ball of wax.  There’s been much on me lately.  

The political issues going on here in the US are huge and heavy.  Many do not feel they’re being heard by their elected representatives.  It’s not just recent.  Many think it is, but it’s an escalating trend that spans 4-5 decades.  (I explain that because I know most of my subscribers aren’t American.)  I’m, typically, pretty vocal without being hateful about my own personal stance on it.  My husband is not allowed a stance for obvious reasons.  He serves his country, even when he doesn’t agree with it.  

Anyhow, I’ve been told by acquaintances that my “extreme” religious and political views can be a turn-off to potential (home based party plan business) customers and potential customers in my Etsy store (not like I do a bustling business there).  My thought process on it is that I don’t want anyone in my life who would rather I be fake.  I don’t see myself as extreme in any sense.  I’m one of the most laid-back and calm people I know.  Really.  Getting worked up requires energy I just don’t have.  LOL!  

What I am, though, is honest.  It’s been said to me many times in my life that honesty is one of my best traits.  People know where they stand with me.  I almost never offer an opinion unless asked or in the company of close friends.  

Am I willing to lie about my political beliefs to make a sale?  Um, no.  Am I willing to smother my love for Christ to make a sale?  There isn’t a “no” strong enough to convey my sentiment on that.  

Obviously, I’m not one to just fall in step.  I homeschool my children all the way to college.  I am married to a soldier.  My wedding ring is tattooed on.  We are a non-vaccinating family.  I’m not about to curb myself for sales, especially for something that doesn’t even come close to paying my bills.  

Would you curb your political views or your religion for sales?

Posted in Uncategorized

Jambalaya

I get asked, often, “What DO you guys eat???”  It’s a bit of a daily struggle for me.  I want comfort food.  Rotisserie chicken and sweet potatoes can get old.  LOL  The rule of thumb is usually that meat + veggies = safe.

Anyhow, tonight’s dinner was Jambalaya.  The spiciness is flexible.  

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2 T coconut oil (or oil of your choice)

1 medium-large yellow onion diced

3 bell peppers, any color, diced

2 stalks celery chopped

8 cloves of garlic, minced

1lb sausage of your choice, diced (andouille is traditional, but I used Angus skinless)

1lb chicken or seafood (shrimp or crawfish tails) or both, cooked and diced (I used leftover baked chicken)

2 cups crushed canned tomatoes (I used tomatoes I canned myself)

2 cups stock (chicken, beef, or veggie all work fine)

1 cup water

2 cups parboiled rice

1 tsp chili powder

1 tsp dried parsley

1 tsp dried basil

1/4 tsp salt or to taste

1/2 tsp garlic powder

1/4 tsp red pepper or to taste

1/4 tsp black pepper

 

In a large pot heat the oil.  Add all your diced veggies and begin to cook them until slightly clear.  Add in meats and all other ingredients.  Bring to a boil, reduce heat, and simmer 20-25 minutes stirring occasionally (or until the rice is cooked through.)

 

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Pizza bites, dairy-free

Before allergies this was a favorite recipe.  Then I was told that the girls were allergic to eggs.  There was no way to recreate this without eggs.  After a while, the girls still weren’t healthy and we were told that the eggs had likely been a false positive, but now we needed to eliminate gluten and dairy (even though they tested negative for allergies to those).  We’ve all learned that allergies are a tricky situation.  

 

Anyhow, the girlies have been bugging me for pizza.  You can find plenty of gluten-free pizza crust recipes, but not really dairy-free.  What’s pizza without cheese?  I’m working on it.  

In the meantime, I quadrupled the recipe and substituted 1/4 cup nutritional yeast flakes for the cheesy flavor.  Pizza sauce on the side made it a hit.

 

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Flax Focaccia revisited

The boy, my 18 year old son, says that he prefers the batch that was baked with the egg replacer.

That particular batch did not rise and came out the thickness of flatbread.  He said that the successful batch felt like too much bread for his sandwich.  

The precious pumpkins also tasted the flat batch and preferred it.  

Posted in Uncategorized

Flax fococcia bread for sandwiches

I used this recipe.  It worked nicely and was super simple.  I give it 4 out of 5 stars.  The only thing this recipe is lacking is affordability.  It takes 5 eggs and 2 cups of flax meal to make enough bread for 6 sandwiches.  That’s a tad on the expensive side for a family of 6 and sometimes 7 people.

I’ll definitely make it again, though just because it was so fast from start to finish.  

15 minutes prep and 20 minutes in the oven.

What I learned?  Egg replacer does NOT work in this recipe.  You HAVE to use real eggs.  Image