Spring, Sadness, Hope

I watched this video yesterday and broke down crying.  It pulled on my heart strings because I know exactly how each of the moms feel.  You struggle privately and have to put on a brave face for your kiddo.

Going through TSW is incredibly isolating because it isn’t a well known condition.  People have never heard of it.  Whenever I post updates or pictures I always get people saying things like, “OMG!  That’s an allergic reaction!”  or “coconut oil took care of my small patch of eczema!”  Insert head-slap here.

Also not particularly helpful is reaching out to the mother of a sick child….trying to sell them something as a MLM distributer.  We’ve tried every lotion on the planet at this point, I’m sure yours isn’t going to be the magic bullet that will end his suffering.  But….um thanks for offering??

Or posting progress pictures.  I always point out that’s he still has a long way to go.  But still people “be like” Hallelujah!  He’s finally healed!!  Um…slow down.  He’s still very much suffering and going through this.  I just like to post pictures when there is any progress to encourage myself and let everyone else know how he is doing.

Speaking of that, he has come a long way.  When you deal with something like this it is easy to fall into hopelessness because it just goes on….and on.  He’ll make major progress and then flare again.  Our hopes will rise, then get squelched.  But I know every single day we weather brings us one day closer to him being healed.

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This was about 1 1/2 months ago.  Yep, RSS is that horrific.
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That’s him now.  Not healed but making progress!

At the moment he is flaring on his face pretty badly.  He doesn’t want to leave the house, because he is so embarrassed.  He’s lost weight off of his already very skinny little body.  In spite of seemingly eating 24/7 he is very thin and his clothes hang off of him.

I also believe he is healing on the inside too.  His organs became steroid dependent as well.  Every morning he has a hard time getting going.  We need to carry him out of bed, get him breakfast, and then bathe him.  I still need to wash all his bedding every single day.  Because every night it gets bloody and crusty and covered in his dead skin.

We are hitting this thing from every possible angle.  Probiotics, vitamins, homeopathy, bone broth, garlic, sea salt….just every thing we can do to help him.

That’s been our focus and it’s really brought us all together.  I feel closer to my husband than ever.  I thank God for our solid marriage.  He has been my partner in this 100% and is so quick to sacrifice for his family.

Most days we are doing pretty good considering.  When you’re going through a long term crisis everything else get’s backburnered.  We barely celebrated Easter.  We haven’t really been able to go to church in ages because it takes so long to get Gabe going in the morning.  I was ok with that until I drove past a cross with ribbons billowing in the wind the Monday after Easter.  I felt an unexpected tidal wave of sadness at not being able to celebrate my favorite holiday the way I would have liked.  It threw me into a bit of a depression for the rest of the week.

But I know that next year will be totally different.  Next year we will go all out for Easter.  Next year we will properly celebrate our Anniversary.

We know that our faith has carried us through this and also all the many prayers offered up for Gabe.  Thank you everyone for your continued support and prayers!!

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.

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.

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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.