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.

 

 

 

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

My Power Source

I haven’t written in a while.  Summer is always a busy and chaotic around here!

I also switched jobs.  Now I work part time as a barista at a Target Starbucks.  Honestly, the job I’ve wanted for a long time.  I love Target and I love Starbucks!  I also love getting a discount, yay!  13626415_10154249884502429_8547029261097152568_nMy friend snapped this on my first day.

My husband’s brother and his family visited for the first time from Virginia a little over a week ago.  It was incredibly special.  We had a blast, hanging out and doing tourist-ey things with them.

Tomorrow is a big milestone for me.  I’ll be turning 30.  I’m kind of sad to leave my 20’s behind, but older = wiser, right?

I watched the movie ‘Miracles from Heaven’ a few nights ago.  At about 20 minutes in I started crying and couldn’t stop.  It just touched so many nerves for me.  The child in pain, the mom losing hope- it’s definitely been where I’ve been at for a long time.

My 7 year old son, Gabriel, has had severe eczema for years now.  It has been so tough for him.  Lately we haven’t been letting him play outside because he reacts so strongly to the allergens.  His eyes are always bright red lately.  There’s times where he can’t sleep because the itching or pain is so intense.  And all of this with daily anti-histamines and steroids and expensive lotions.  It feels like a never ending nightmare.

Watching him suffer, day after day, had really hardened my heart towards God.  Gabe had asked me, “why did God let me get eczema?” and I’m at a loss for words.

No, it isn’t as serious as what the Mother was facing in the Miracles movie.  But his condition has been devastating for him.  To the point that when we went to meet his cousins (in 90 degree heat) he cried because he wanted to wear a sweatshirt to cover up all the redness, bumps, and open sores.  He is also limited in his daily ability to just be a kid because the itching and allergies make him so miserable.

We’re still going through it.  There’s no end in site.

I think most (if not all) Christians face a make or break trial.  Something devastatingly hard, something that never seems to end, something that hits home.  Those times test what we know to be true.

God was speaking to me through that movie.  I realized I’ve been ‘under’ the trial and the devil was running roughshod through my life.  In my pain and sadness I was distancing myself from God, my power source, and leaving myself very weak and vulnerable to attacks from the enemy.

“Now if we are children, we are heirs- heirs of God and co-heirs with Christ, if indeed we share in his sufferings in order that we may also share in his glory.” Romans 8:17

I have resolved to hold tighter onto Christ through this.  I believe in miracles.  Especially the quiet ones, where God uses tough circumstances to do an incredible work in us.

My sweet boy, with his Daddy….

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Dark Tunnel

Today I’ve been thinking about brokenness in life and finding glimpses of light in dark spaces.  Cheery, no?

Life is heavy.  Life is hard.  Sometimes it all, plus the unrelenting pull away from God can all be too much.

I have a child with aspergers, high-functioning autism.  It’s never easy but sometimes it is just so hard.

Another child has eczema an it is a daily struggle to keep it under control.

I have my own health issues- which means I am on a very restricted diet or  I feel awful.

I tend to get sad and withdrawn because of the weight of it all.  So often we bear our burdens alone.  No one can totally understand what we go through.  Or we get platitudes or the dreaded unsolicited advice.

Plus the pressure we feel to act like everything is ‘ok’ when it isn’t.  Suffering is just part of life.  I wish we could just let things be what they are without trying to put a positive spin on it.

But if we are real we risk being judged or having our pain minimized.  Like Job.  We are uncomfortable with suffering so we try to come up with a quick fix, an answer, a reason…when sometimes things are just broken.  Sometimes prayers just go unanswered.

If we can’t be real in our brokenness and honest is our faith even real?  Jesus was the ‘man of sorrows’.  He understands even when no one else does.

“Truly I tell you, at the renewal of all things, when the Son of Man sits on his glorious throne…” Matthew 19:28

I’ve been thinking about that a lot- that there is going to be a great renewal of all things.

Every burden lifted.  Every tear gently wiped away.  Every last broken thing gloriously made right.

In the mean time I pray that my own pain and brokenness makes me a more compassionate, merciful, caring person.

No one has it all together.  We all have private hurts, pain, and burdens.  We all need mercy.  I think pain can be like the surgeon’s knife- cutting out the pride and arrogance and leaving something a little messier and tender and Christ-like in it’s place.

“Lord, all you asked us to do was to believe and follow you.  Help us to do that in spite, or even because of, our circumstances.  Help us to love.  Help us to be beacons of grace in a harsh world.  Help us to be strong until you come to set all things right and make all things new.”