Red Skin Syndrome

Gabe is flaring really badly.  The red skin has spread to his arms and legs.  His torso doesn’t look so bad anymore but his legs and arms look awful.

Last night round two started, complete with violent shivering and ooze galore.  When I took his pants off to get him into the bath his pant legs were literally soaked with the ooze running off his body.

“If you’re going through hell, just keep going.”

I spent all morning with him in the bathroom.  It took 45 minutes to coax him into his bath.  He was so scared that the water would sting.  It didn’t, but he has so much anxiety.

No one got much sleep last night.  Gabe was itching and ripping his skin open and then screaming in agony.

It’s been hell.  There just aren’t any other words.

If there’s anything I’ve learned about topical steroid withdrawal it is that it is far worse than you anticipate and lasts far longer.  People new to the process see the horror stories online and assume that they won’t be as extreme, they’ll sail through.  Very few people do.

I thought that too.  We used the steroids sparingly.  Then I found the bottle of prednisone he had taken for his pneumonia a few months back and my heart sank.  Tim found out the cream he had been prescribed was a class two potency (one being the absolute most potent).   Then it dawned on us that the journey back to health was going to much longer and tougher than we’d anticipated.

I feel such anger that we weren’t warned about his.  This is so common and yet most dermatologists will not even admit that it exists.  This condition is entirely preventable.  This condition happens when an eczema problem becomes a steroid addiction problem (often under the leading of doctors) and the problem is almost entirely caused by the steroids at that point.

Gabe’s mystery red rash and worsening “eczema” led to us using more and more steroid to try to keep it under control.  Angry red skin is not eczema.  How come parents can figure that out, using nothing more than intuition and a search engine but dermatologists can’t?

This is Red Skin Syndrome, not eczema.

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One Day at a Time

This has rapidly become a “TSW” (topical steroid withdrawal) blog.  I know, I know.  Just shy of three weeks ago we were thrust into this world we weren’t aware of.

Now I look back and I can see that at least 90% of Gabe’s “eczema” we’ve been treating for ages was, in fact, actually symptoms of damage and addiction from the creams we were using.  How horrible is that?

It is vindicating to me, in a way; as a more natural-minded type of person.  I never wanted to use steroids anyways.  I did when I felt like it was the only option.  Now I know there are so many natural ways to treat eczema.

It’s a difficult process to go through any sort of withdrawal.  Though topical steroid withdrawal is particularly brutal.  Many adults going through this have gotten to lows where they are suicidal.  Because the pain is that bad.  The itch is bone deep.  You can go days without more than a few hours of sleep. Your skin looks absolutely horrific to the point where you don’t want to leave your house.

I feel like we have been extremely fortunate in that Gabe is still sleeping relatively well.  He is doing very well emotionally.  He seemed ok to me but I wanted to make sure and I was asking him questions about how he was doing “on the inside” with all of this.  He didn’t know what I meant so I said, “does going through all of this make you feel sad?”  He looked at me like I had asked him an inane question, “of course not, why would it?”  He has had a good deal of pain and discomfort but he has taken it in a stride.  He is handling everything so well.

We’ve been doing everything we can to help his body heal.  He was on antibiotics because his skin had gotten “staphy” at one point early on.  He’s been drinking a lot of kombucha to help build up his good bacteria.  I’ve also made a couple pots of super healing soup.  The combo of bone broth, veggies, and spices is so good for him…and it tastes good too!

We did get great news from the dermatologist we saw last week.  She has swabbed Gabe to check for pathogenic bacteria.  I was actually shocked when it came back negative.  She said Gabe had normal skin flora and that the Doctor said she thought our regime is working well, and to keep it up.  That is huge because the main risk now would be from a serious secondary infection (from staph or step) until his skin is in better shape.

We were doing two baths a day when he was in really rough shape.  Now we just do one, at night, with warm water, sea salt, ACV, and lavender oil (we avoid soap cause it dries him out).  After his bath I put on coconut oil, Egyptian magic, clove oil (just two drops, heavily diluted) and silver gel as needed.  Our magic potion ingredients- 20170307_221256.jpg

I’ve read that there isn’t much you can do to speed up the process of withdrawal.  But I don’t think that’s true.  I’ve scoured so many blogs and articles and I really think that you can aid the process of healing along in many ways.

A huge way to hasten recovery is with positivity.  I’m a faith person so I believe 100% in the power of prayer.  I know Gabe has so many people praying for him and that has carried us through to this point.  I also believe that our faith has kept us positive and joyful, even during our worst moments.  We are looking for and celebrating every sign of improvement.  We are looking on the bright side.  We are practicing thankfulness.

He is showing improvement.  I don’t want to jump the gun, because I know that recovery is cyclical, but we are happy, nonetheless.

This was his back about ten days ago- 20170227_171250

This was him today- 20170307_134034.jpg

His neck and torso were initially the worst spots.  Now they are looking much less red and inflamed.  Though it seems to be working it’s way out, down to his legs and up to his face and his hands.  His legs are almost purplish as the blood vessels are very dilated.

“One day at a time” has been my mantra and that is how we will continue to handle this.  We will do everything we can but ultimately trust that we are doing the right thing and that God is sovereignly guiding this process.

The good that has come has been that we have drawn closer together as a family.  We now finally know the cause of Gabe’s ever-worsening “eczema” and more importantly, we know what to do.

Strength in Joy

This process of Gabe going through topical steroid withdrawal has been the hardest thing my husband and I have ever gone through.  A difficult and painful road, and made so much worse by the fact that the medical community refuses to acknowledge the scope of the problem (or even that it exists).

Trying to explain to Gabe’s school was difficult, what do you say?  My child can’t come to school because his skin is raw, peeling off, and he can barely move?   Is it his eczema?  No…. it’s steroid induced red skin syndrome.  Just try explaining that succintly.

The first fews days we were in total crisis mode.  Gabe was in very rough shape.  Now, thankfully, things have calmed down quite a bit though Gabe still deals with a lot of pain and suffering.  We still have to coax him into the bath because his skin is so raw it is sensitive to the slightest touch.  He wakes up in a literal pile of dead skin, as his skin is shedding faster than we can keep up with.  He still needs helps getting out of bed and getting into the tub.

But, like I said before- we have hope.  This condition is as simple (though agonizing) as letting the body heal from the steroids.

I pulled this picture from the ITSAN website…. donate

This little girl recovered.  Gabe will too.

In the midst of this storm though I have had an almost irrational joy and optimism.  I think this is what it feels like when God goes through the fire with you.  The flames are real but so is His peace.  He never lets go.  Even when we doubt and fear and blame him.

“This day is holy to our Lord. Do not grieve, for the joy of the Lord is your strength.” Nehemiah 8:10

 

 

Update on Gabe

I ended up deleting my past 4 posts for a couple reasons.  My husband didn’t like that I was putting Gabe’s suffering out there for the World to see and also that we want to be able to do what’s best for Gabe without fear of outside forces *ahem* meddling.

My husband and I process things very differently.  He is very stoic and private.  I’m an open book and sharing (with as many people as possible) makes me feel better.  But I respect his wishes and I see his point.  We will probably share more when Gabe is well along his healing journey.  We do want to raise awareness.

But still, there is good news and darn it, I want to share!  Gabe is doing a lot better than he was last week.  A lot of the more frightening symptoms have subsided.  His skin doesn’t look nearly as red.  He still has a lot of healing ahead of him, but we are so encouraged.

His actual eczema is almost non-existent.  I still believe God touched him and healed his eczema.  We saw enough of an improvement that we were prompted to get him off the steroids- the medicine that was poisoning his body.  Now we just need to go through the withdrawals.

Like so often, healing is a journey.  It’s a path.  There are good days and bad days, ups and downs.  But you discover so much along the way.  The journey itself becomes sacred in it’s own way.

We have also found an online community of people on this same journey.  There is a lot of encouragement and help to be found.

I do believe that God is blessing Gabe with a quick healing.  Some things I am doing to help are…

-twice daily soaks in the tub.  Sometimes up to an hour.  We toss in Epsom salt and essential oils or olive oil and fresh garlic.  After twenty minutes or so his pores really open up and I think he has been able to do a lot of detoxing that way.  The steroids cause the skin to constrict, and he was on them for so long his skin hasn’t properly detoxed in ages.  TMI alert- the bath water takes on the characteristic icky ooze smell so associated with TSW after awhile.  It gets pretty gross.  I theorize that it’s toxins and trapped sebum in the water.

We’ve also been using a zinc oxide (diaper rash cream) on his really bad spots.  For the rest of his body it is Egyptian magic, coconut oil, silver cream, and a drop or two of clove or lavender oil.

He is on antibiotics because he had gotten ‘staphy’ on his arms and torso last week.  That looks a lot better and we hope this is the only time he’ll need them.

We met with a new dermatologist today.  She was very understanding and admitted she thought Gabe did have a problem related to the steroids, though she stopped just shy of labeling it as “RSS”.  She was very supportive of us treating him without steroids.  She wrote us a couple perscriptions that may come in handy.

Gabe is handling this all really well.  He has been such a trooper.  We explained to him what was happening and why, and he has been so brave in handling a process that is very painful and difficult.

 

 

 

Of Trust

I saw the news about Saeed and Naghmeh Abedini yesterday.  To make a long story short- they were a Christian couple in ministry.  He was arrested for sharing the Gospel and held (and tortured) in Iran for 4 years.  His wife, Naghmeh, campaigned tirelessly for his release.  It was a big deal to the Christian evangelical community.  So he finally gets released and…she gets a restraining order against him basically as soon as he steps off the plane.  Turns out, there had been years of abuse behind the scenes.  A lot of the tireless work she had done for him had been under emotional coercion.

It is sad and disappointing, but not really all that shocking to me.

I’ve been stewing on this post for a long time.  A post about how we can’t put our trust in people.  Seeing this story really motivated me to write it.

I have my own story to share.  It’s a tale of a crazy ex step-dad.  We’ll call him C.P.

C.P. came into our lives when we really needed him.  My mom was losing her battle with alcoholism.  He was a recovering addict, bursting at the seems with charisma and passion for Jesus.  He shared his testimony with any and everyone and couldn’t talk about Jesus without tears.

He was instrumental in helping my mom get sober.  He took a real interest in my life.  We had great talks about God and he spoke some great things into my life.  I thought he was the mentor I had been hoping and praying for.

Sometime after they got married in a very rushed fashion, C.P. quit his good paying job to focus on writing a book about recovery.  Things started to get weird.  We found out he had been married like 5 times and that one wife had died under mysterious circumstances.

At this time I know God was really preparing my heart for the disappointment and chaos that was about to be unleashed.  God was whispering to my heart that I couldn’t put my trust in man, I could only ultimately look to him.

C.P. (ironically while writing his book about freedom from addiction) was abusing pills and became increasingly erratic.  A lot of horrible things happened but we’ll just say that it ended in divorce because my mom’s life was in danger.

C.P. released his book (which was really as garbled and erratic as his life) and started a new life at break neck speed.  Videos of him sharing his testimony at his new church surfaced within a couple months.

I want to make it clear that I have forgiven this man.  He was charging forward into life, leaving complete chaos and destruction in his wake- because he refused to look inward.  When things got hard he would blame everyone else and look for the next wife, the next church.  He couldn’t stop.  So instead of being still long enough to do an honest inventory and get the deep healing he needed, he just kept running.  He was running from the pain of his past and trying to numb the pain inside, but pain has a way of demanding to be dealt with.  We tend to continue to perpetuate that which we don’t face.

We tried to confront him at one point and he was pacing and sweating and ultimately took off because he couldn’t (wouldn’t) face the truth.  It was his life, in a nutshell.

It could have shipwrecked my faith but it didn’t.  It was such an important lesson to me.

“Do not put your trust in princes, in human beings, who cannot save.” Psalm 146:4

People can provide so much to us- love, encouragement, companionship…all that.  But people are going to fail.  People are going to let us down.  Churches and organizations too, because they are run by people.  Even the best of us still struggle daily with our fallen sin nature.  You show me someone living victoriously in Christ, and I can guarantee that person has struggles in the dark that they need to overcome (every.single.day.) to live that outwardly victorious life.

The danger in hitching our faith wagon to a person or organization is in that they could possibly go off the rails and take us with them into a ditch.

We can (and should!) go to church and look up to people further along in the faith than us.  But we need to be so careful to know that our faith is in God.  Not our church.  Not our Pastor.  Not our mentor.  Because God is the only one capable of being perfectly what we need him to be.  He is the only one who will never fail.

Not only that but when we put these ‘super-Christians’ on a pedestal we absolve ourselves of the call on our lives.  Like, “they have it goin’ on because there is special favor on their lives.  I could never be like that.”  The truth is that God does not show favoritism. Acts 10:34  If that person is rocking it in the faith department it’s because they have taken the steps to get there.  The invitation goes out to all.  It’s up to us to answer, and to what extant.

We can have it to.  You can be as close to God as you want to be.  You don’t have to settle for a second hand faith.  God wants to be real to you too, he wants to move as powerfully in your life as say a Beth Moore or John Bevere.  There are no favorites.  And that means when people we admire screw up royally, it doesn’t have to wreck out faith.

“Therefore, since we have a great high priest who has ascended into heaven, Jesus the Son of God, let us hold firmly to the faith we profess.” Hebrews 4:14

People change.  Circumstances change.  Our churches may change.  But…

“Jesus Christ is the same yesterday and today and forever.”

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For the Joy

I realize I’ve blogged a lootttt on the topic of suffering.  I write from where I’m at.  I write what is on my heart and what God speaks to me.  I write because I feel called to (and heck, I like it) and to hopefully encourage people.  I’ve written a lot on hardship and I feel like it’s a good thing because people can relate.  I certainly don’t think we should (or need to) minimize our pain.

Suffering is an undeniable part of life.  If you are walking this Earth with feet of clay you are going to have to contend with pain and difficult trials.

But I believe that suffering has an expiration date.  We are not here to suffer.  We are here to enjoy intimacy with our God and live in victory and freedom.

“For if, by the trespass of the one man, death reigned through that one man, how much more will those who receive God’s abundant provision of grace and of the gift of righteousness reign in life through the one man, Jesus Christ!” Romans 5:17

Suffering is always a means to an end.  The end being that God is glorified.

As I was getting ready for church yesterday I was thinking about the story of Lazarus.  Lazarus was a very close friend of Jesus.  Lazarus had two sisters that were very close with Jesus as well; Martha and Mary (who have their own story, but for another time).

Lazarus had gotten very sick.  A messenger ran to get Jesus.  Jesus waited 2 whole days before leaving to come see Lazarus, the text says he waited until he knew that Lazarus had died.

Martha and Mary are understandably upset.  When Jesus does show up, Martha runs out to meet him.  “Lord, if you had been here, he wouldn’t have died!”

Jesus looks deep into her eyes and makes this powerful statement, “I am the resurrection and the life. The one who believes in me will live, even though they die; and whoever lives by believing in me will never die. Do you believe this?”

They were just hoping that Jesus would heal him.  Jesus had different plans.  He went to the grave, where he had been buried 4 days prior.  He comforts Mary and Martha and even weeps with them.  He knows our pain, because it’s his pain.

“Roll the stone away.”

“But Lord, there will be an awful smell…”

“Did I not tell you that if you believe, you will see the glory of God?”

So they roll the stone away and Lazarus is raised from the grave.

I got to church and what was the pastor preaching on?  The story of Lazarus and how it relates to us.  It was a God-thing.  We brought our son up to have him prayed for after the service.  This morning he looked a good 50% better with most of the redness and swelling gone and months-old wounds showing signs of dramatic improvement.  We know he got a special touch from God and we are believing that he will receive complete healing.

We serve an awesome God.  rays-of-light-shining-throug-dark-c

There is a powerful message in this story.  We may suffer, yes.  But we know that at some point Jesus is going to come into our situation and command some stones to be rolled away.  When Jesus shows up, he brings life with him.  He is our healer.  He is 100% good.  He is 100% for us.

Ultimately, for us who believe, we will be completely healed.  We don’t know the time table, but we know the one who does.  Jesus triumphed completely over death and the grave.  One day, death will be swallowed up.

In life we will always have an element of suffering.  We live in a fallen World.  I have my own share of suffering, as do you.  But I also have so much joy.

For the joy set before him he endured the cross, scorning its shame, and sat down at the right hand of the throne of God.” Hebrews 12:2

“And after you have suffered a little while, the God of all grace, who has called you to his eternal glory in Christ, will himself restore, confirm, strengthen, and establish you.” 1 Peter 5:10

Suffering doesn’t get the final say.

 

Of Hope and Heroes

My thoughts for today are on the importance of hope.

I’ve blogged frequently about my son, Gabriel, and his eczema.  I actually don’t talk about it much in life, for whatever reason.  There just doesn’t seem to be a point. I think a lot of people were unaware of how serious he was until it spread up his neck.  His eyes have read rings around them and from his jaw down, he is almost completely covered in red, angry skin with areas of swelling and infected wounds and abscesses.

It’s really bad.

There is no “but”.  It just sucks.  It’s horrible.

He usually handles it so well.  Most mornings he wakes up tired and in pain and doesn’t want to go to school.  But he does so well.  I just got his report card and he is meeting or exceeding expectations in every area, in spite of his frequent exhaustion and pain.

Today everything came to a head.  He came home emotional and angry.  He was crying and screaming and kicking his closet doors.  I had to force my way into his room and I had the sense to just let him be angry.  To just be there with him.  I sat with him until he let me hold him.  I just held him until he was ok again.

I sit here with tears streaming down my face.  This is so hard.

I’ve said before there have been times where this thing brought me to the edge of myself in every way.  Times where I refused to pray anymore.  Times when I could only look at and treat his naked body with a glass or two of wine in my system.

It’s been brutal.

But I have been praying and seeking and finding God again.  He reminded me of a story, a testimony I heard many years ago.  It was a ‘strong man’ who came to the church we were attending.  His thing was feats of strength- rolling up frying pans and breaking wooden baseball bats.  He did his feats and then shared his story.  Growing up he had been chubby, asthmatic, and completely immobilized by anxiety.  The most impressive thing about this man was how unbelievably tender his heart was and how incredibly he was advancing God’s Kingdom.

I think of his story often and it gives me hope. 

Awhile ago I was talking with Gabe and the subject of the movie “Terminator” came up.  I outlined the plot and he wanted to know why the robot wanted to kill Sarah Connor.  “Well, I said he knew she was going to raise a hero.”  As I said those words I was overcome with emotion.  I saw Gabe as a future hero, that that’s why his life has been under so much attack.  I refuse to let the enemy have him.

I am going to raise a hero.

“So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal.” 2 Corinthians 4:16-18