A Quiet Sort of Romance

I quit my job at Starbucks so I could be home full time.  Gabe is still struggling daily with TSW.  Half the time we have to carry him around.  There is loads of laundry to be washed daily.  Lots of skin to be vacuumed.  And of course he just needs a lot of care and attention.

We are 2 months in to this journey and it has been a huge drain on us- in every way.  My husband said at one point, “we are just going to have to give each other extra grace right now.”  As sleep deprivation piled up and emotions ran high we have gotten in to petty arguments and snapped at each other…. but more than that we have loved and supported each other through this.

Our 10 year anniversary is this Friday and it will likely pass without much fanfare.  We wanted to go on a trip together and I was hoping for some anniversary “bling”…. but that was back before TSW took over our lives.

That’s mostly ok with us.  We’ve never really done things conventionally anyways.

The real gift is ten years of happy marriage to the man I love.  You get married hoping that that person will love you and stand with you through the good and tough times.  You get married so that you have a partner in life, that you never have to face the difficult things alone.  You get married hoping to create a family and a lifetime of memories.

I’ve found that in my marriage and that is enough.  A quiet sort of romance.  An enduring love.  Ten years in and I still enjoy his company.  He’s still amused at my antics.  I still don’t want to let go when we hug.

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Our first Easter as a Family, 9 years ago

When I met Tim I was 20 and a single mom to a toddler.  I had been dating without much luck.  When I met Tim, I knew from the first date, that he was “the one”.

The INFJ in me loved his humility and lack of pretense.  That first date I saw the true him.  He was authentic, honest and kind.  He is truly honest to a fault.  He is just a good person.  He didn’t hesitate to take on a step son.  When we went through a difficult custody battle two years into our marriage he sold his beloved truck (that he had just finished paying off!) so we could hire a good lawyer.

“Every good and perfect gift is from above, coming down from the Father of the heavenly lights…” James 1:17

I know Tim is just that to me; a good and perfect gift.  17951693_10158638684060074_7487367056105280349_n

Honey, I love you and I am so blessed to be your wife.  Through good times and bad, there isn’t anyone else I would have by my side.

I know things will get better but until then, I am just happy to have you by my side.

I love you so.

Rebirth

It’s a bit gloomy here (spring is always dicey in Minnesota!) but there are undeniable signs of spring.  I can hear birds chirping right now and the sun is trying to peek out.  I have been so happy because I love spring so much.  The winter here is long, cold and dark.  It isn’t even just the weather though, it’s that spring is such a symbol of new life and rebirth.

Spring always brings fresh life spiritually as well.  I love Easter and all that it represents.  Ten years ago it was spring when I finally let God in and had the most joyful season of jubilee that I will forever be marked by.

My life is a bit crazier than usual at the moment.  I am in a full-time caregiver role to my son who is navigating red skin syndrome.  He is mostly bedridden.  His hands, wrists and legs are the hardest hit.  So much so that walking or even writing with a pencil is difficult, and at times impossible.   He is also struggling with insomnia so he is often very tired and cranky.

I know it is so imperative that I stay positive and joyful as his caregiver.  Positivity is HUGE in healing.  https://www.psychologytoday.com/blog/owning-pink/201112/can-positive-thinking-help-you-heal  I need to create an atmosphere of positivity to help Gabe cope with his pain and frustration.  Also, I need to stay positive to cope with being thrust into a very intensive caregiver role.

I had been really struggling.  Big time.  I was just succumbing to the negativity in my circumstances.  It wasn’t just everything Gabe was going through.  We all got sick for a ridiculous amount of time, two rounds of back to back flu.  Plus my youngest acting out to get more attention (can’t blame her).  Plus family drama.  It was just a lot to deal with.  And when I feel like that I inevitably start getting angry with God.

God is good and loving and generous and all that.  But there are seasons where he really wants to mature us.  He wants us to seek his face, seek HIM, and not all the wonderful blessings he bestows.  We all get our “Job” moments.

I feel like I’ve gotten more than my fair share….but then I realize God had also bestowed such underserved favor and blessing on me as well.  I have SO much to be thankful for.  SO much.

I decided to really embrace joy and walk in trust and joy has been bubbling over.  I have been ecstatic.  I’ve been really happy.  Really.  It’s proof that we can be joyful and thrive in our faith even when circumstances are beyond difficult.

“Rejoice in the Lord always: and again I say, Rejoice.” Phil 4:4

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Gabe is doing pretty good at the moment.  I discovered a new very promising therapy for him, cannabinoid oil.  I had been applying it to his skin without much improvement but then I decided to give him a drop internally.  Wowza!  He showed a huge improvement.  He was happy and walking around and playing, which is kind of a miracle at this point.

Unfortunately I had already used most of the bottle on his skin so I ordered some more this morning.  If this process has taught me anything it is that we should look to natural cures and therapies that work with the body instead of against it.  Many people take steroids (which shut down the bodies inflammatory response) then when that stops working they get immunosuppressant drugs which shut down their immune system.  We were perscribed such immune-destroying drugs but I’m so glad we didn’t use them.

In closing, please know that there is a God in Heaven who loves you.  He created you.  He uses both the good and the hard things to get your attention, to make you look upward.

“No, in all these things we are more than conquerors through him who loved us.” Romans 8:37

 

 

Getting through this Season

I wanted to write another update on Gabe, because I haven’t for awhile and people ask how he is doing frequently.

It’s 6 weeks in and he is still in the hardest stage.  People keep asking, “is he better yet?!”  No, he isn’t.  It’s a long, painful process and it just takes time.  No, it isn’t an allergy.  No, it isn’t eczema.  There is no magic bullet.  His body has to withdraw from the powerful steroid creams.  That is a painful and difficult and long process. 20170322_133757

The withdrawal started on his torso and neck but has worked it’s way down to his legs and arms.  His neck and torso do look a lot better at this point.  His legs look awful.  They are by far the worst hit, because they received most of the steroids over the years.  They are so dark they are almost purple.  Every night we have to wrap his legs in bandages so he doesn’t shred them.  Every night those bandages are soaked in blood and ooze. 20170322_134059

Because of the rough shape his legs are in, and the toil the withdrawal is taking on his overall health, he can’t walk at this point.  Well, not more than a few steps here or there.  We carry him around the house.  We are almost housebound.

We’ve been dealing with not only this but two rounds of the flu.  Plus, a certain neglected 4 year old decided to stop going #2 on the toilet for a week.  It was a week of negotiating and cleaning poo out of her clothes and off of carpet, walls, the ceiling (JK)… and on top of that I’ve been dealing with hurt over a lack of support through this, from the people I’ve supported in the past.

Plus most days we are exhausted because Gabe isn’t sleeping super great and needs treatment or just support through the night.

They say when it rains it pours.  It can get hard to stay positive and I’ve done my fair share of crying alone in my closet.

Hurt and disappointment seep in and have a way of hardening the heart towards God.  I woke up a couple days ago with the thought resounding in my mind, “you have an enemy and it isn’t God.”

God doesn’t cause the pain or hardship however he allows it.  Pain can be a powerful impetus for change.  I know I have quite a few “weeds” in my life that God wants to prune away.

 “But we have this treasure in jars of clay to show that this all-surpassing power is from God and not from us.  We are hard pressed on every side, but not crushed; perplexed, but not in despair;  persecuted, but not abandoned; struck down, but not destroyed.” 2 Cor. 4:7-9  joy-comes-in-the-morning

Yes it hurts, and it’s hard.  But we know that we will get through this.  We know that God is for us.  We know that there will be a rainbow after this storm.

 

 

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

 

 

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.