When You’re Going Through Hell…

…you just keep going.

It’s a bit of the unofficial motto of TSW, or Topical Steroid Withdrawal.

In the ITSAN facebook group I belong to, I frequently see people post things like, “I can’t do this anymore.”  or posts from people who have just started the process of withdrawal and they are terrified of how bad things are going to get.

It’s like waking up and discovering that you’re up to your neck in quicksand.  You either give up or begin the long and painful process of clawing your way out.

Yesterday I was thinking about the visits we had to Gabe’s dermatologist.  At first he had responded very quickly to the super potent creams.  But on follow up visits his eczema had returned and was spreading.  I remember the almost shrill tone of her voice as she told us we needed to use more cream.  We needed to apply it twice a day.  We needed to seal it in with wet wraps.  We needed to follow her instructions exactly and we weren’t and that’s why he wasn’t getting any better.

Of course now I know that those cursed creams were killing him.  His skin was the tip of the iceberg.  I am so glad we never used as much cream as she wanted us too.  I’m so glad we used the protopic (an immuno-suppressant cream) only a few times.

His health was getting worse and worse.  The steroids weren’t working anymore.  He had a weird red rash on his torso that wouldn’t go away.

My husband discovered TSW reading an eczema blog.  Everything definitely clicked.  We had answers but now we had to weather the hellish withdrawl.  We had to claw our way out of this quicksand that we had stumbled into.

Eight months later and the redness has faded.  But right now he deals with nerve pain where the nerves are healing and regenerating.

His legs aren’t a mottled purple anymore but he still oozes plasma out of too thin skin.  He still wakes up in a pile of his own dead skin every morning.

He is still very dependent on us for much of his care.

I don’t know why I am writing this other than I just need to get his story out there.  The medical establishment almost killed him.

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His entire body went through this extreme and painful withdrawal.  Thankfully, it didn’t hit all at once.  This was the first month when it started on his neck and torso.

 

I implore people, please do you own research.  Don’t blindly trust someone because they have a stethoscope around their neck.  Investigate the ingredients of anything you allow to be put on or in your body. gabebabe

It’s been a long fight, an all out bloody crawl, back to health.  But this is my beautiful boy today… healing naturally with the help of supplement and lots of TLC.

He still has a long way to go but we’re thankful for the progress we’ve made and all we’ve learned along the way.

 

 

 

 

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Hands and Feet

I’ve been pressing in to God through my pain and finding him in hew ways.  Yesterday morning I told him quietly, with tears in my eyes, that I was coming to the end of myself.  At that moment I felt a burden lift and a rush of joy.  Almost as if he was showing me that by coming to the end of myself I can finally come to the beginning of HIM.

I had run through the whole battery of treatment we do to get Gabe up and on his feet every day.  Lotion, ointments, vitamins, calf massage, pep talks… and I drove him to school and he couldn’t go in because his legs were still too dry to fully extend.

We came home and I had a bit of a temper tantrum.  “why is this so hard?  I do everything I can and it’s still not good enough…!”

But I pulled it together and took Gabe to Costco to get some groceries.  On days when he can’t walk I just carry his 50 pounds around until I can put him into a cart.  Yes people stare but I give zero f%#^s.  All along the game plan has been that he’s going to get better so we have not even considered buying a wheel chair.

I’m living in this state of being stretched and praying that God would work in my life.  I’m right there.   So when a woman approached me in the parking lot asking for cash I didn’t hesitate.  She was a single mom, she needed gas money, she was so, so tired… I wrapped my arms around her and prayed.  It didn’t even seem weird to me at all.  I just put my arms around her and prayed for her how I’d want someone to pray for me.  I gave her all the cash I had, which wasn’t much.

As I went back to lift Gabe’s broken little body out of the cart he said, “Mom I prayed too.”

Tears fill my eyes because I am grateful that Gabe gets to see Jesus breaking through in every day life, maybe much more so because of the state that he is in.

I’m absolutely not going to end on any sort of sanctimonious note….except to say that God wants us to remember that it truly isn’t all about us.  Our purpose here is to know him and make him known.  And we can do that even on the hardest days.

The Empty Tomb

Yesterday was a real let down for me.

See, it’s been raining here for dayyysss.  Our back yard is a soggy marsh!  But yesterday was beautiful.  Sunny and 65 degrees.  I was really hopeful that we’d be able to get out and hike and have fun as a family.

But Gabe went downhill really quick.  By the time we got to the park he was already frantically itching.  He shredded up his legs and feet.  We had to go home where I spent the rest of the day caring for him.

As much as I love him I have to admit that being a caregiver to a very ill child is incredibly draining.  It hasn’t just been weeks, or months, but years of this.

But what also happened is that we had a really rich spiritual conversation.  Gabe’s suffering has made him very sensitive to the things of God.  That and all this time I’ve spent with him has made our bond so close.  ggcici

Sometimes I just stop and thank God for giving me such a great kid.

I think about how when he was so little, the times his father and I knelt down next to his little toddler bed and prayed over him while he slept.  We dedicated our child to God and asked that he would use his life in powerful ways.

I was praying a few weeks ago and feeling very discouraged and hopeless even, but God reminded me of those prayers.  He told me, “Just keep dedicating him to me, every day.”

I woke up this morning and prayed and petitioned God with tears. for his healing.

I got this image in return of the sun rising over the empty tomb.

It’s our faith, it’s our life.  The empty tomb is the hope of humanity.

By his stripes we are healed. 20171008_074619

Suffering and pain may come knocking at our door.  They may even stick around far longer than we’d hope.  But the empty tomb gets the final say.  Weeping may last for the night, but JOY comes with the morning.

A Good Day

Yesterday was a good day.

My little girl turned five on Thursday and my mom and step dad came out last night.  They gave her possibly the best gift for her- a gumball machine! 18519821_10158791140855074_8977889329133441059_n Shiloh is a bit obsessed with gum so it’s perfect for her.  Gabe had a good day too.  His little friend came over and he got to play and have fun like a “normal” kid for the first time in a loooong time.  Then he felt up to playing outside with another friend for another hour and a half.  Lots of giggling and running around.  It made me so happy because since we quit topical steroids nearly three months ago he has been going through hellish withdrawals and had many days where he had to carry him because he was too weak and in too much pain to walk.

20170519_182541So he had a great day and got to have cake and ice cream!!  You can see there is still some redness and scabbing on his face.  But he has come so far from these days…  20170225_083718   I got another gift as well.  Gabe had been upset about getting disciplined by his dad.  He was really pouting but I went up and cuddled him anyways.  He said, “Mom, I like being around you because you are always really happy.”  That meant a lot to me because I have really struggled with depression but I don’t want it to affect my kids at all.  I’m so glad Gabe doesn’t see that.

 

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.

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.