Huge Setback

Warning: this blog contains graphic medical photos….

Gabe was doing pretty good.  The liviaone probiotic spray was really helping to clear up his skin.  He was still very much still going through TSW (topical steroid withdrawal) but still able to get out and enjoy life in a limited capacity. 20170630_133401

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This is his feet, looking AMAZING compared to how they had looked just a week or so prior.

 

Then last Monday he started not feeling well.  Very tired, very irritable.  By Tuesday he was getting a bumpy rash and was feverish.  We assumed it was a staph infection.  When it didn’t respond to our treatment at home, my husband took him in to the emergency room.  We got a quick staph diagnosis and antibiotics and went home. 20170704_194659

He was way too sick to go anywhere for fireworks on Tuesday.

Sometime mid Wednesday we realized that he wasn’t responding to the antibiotics.  The rash of little red bumps had spread all over his body.

My Mom came over and suggested it might by measles, which I quickly dismissed.  Later I realized I knew very little about measles so I do some quick googling.  I realized that Gabe’s rash looked very similar to the typical measles rash.

20170705_114604He also had the other symptoms of headache, sore throat and tongue, fever, etc…

We brought him in to urgent care Wednesday night. The took swabs and samples and said we would know by Friday if it were measles or not.

By Friday, Gabe was still in rough shape.  The measles plus his underlying TSW made for a hellish week for everyone.  Gabe’s skin was literally peeling off.  A thick layer of dead skin would come right off to reveal still-too raw red skin underneath.  You can see this on his feet…

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This obviously involved a lot of pain for him- on top of the other symptoms of measles and his TSW flaring.

Yesterday I brought him in to see a pediatricion to get him something stronger for his pain.  Ibuprofen wasn’t cutting it.  When I got to the clinic the ladies at the front desk all made knowing eye with contact with each other and backed away from the desk.  Great, Gabe is the “measles kid” and everyone at the clinic has been talking about it.  He had a mask on and they were well over 15 feet away but the reacted as though I had just rolled up with a zombie-leper in that little child sized wheelchair.

We got Gabe some tramadol and vitamin A.  But at this point we still don’t have answers.  None of the four doctors who have seen him this week have ever seen measles before.  The state health department has taken over his samples and testing so that is delaying getting our answers until Monday or even Tuesday.

How did Gabe get the measles?  We don’t know for sure yet (we don’t even know 100% if it IS measles…) but just a few days prior to all this I had read about documented cases of people getting sick after coming in contact with someone who had recently been vaccinated with a live virus.  Gabe had been around a young child who just got her MMR shot in the days leading up to his illness.  It’s very possible that the child was shedding the measles virus and Gabe was susceptible due to his weakened state.

The Doctor told me that they will be able to tell if his strain of measles is wild or cultivated.  Basically if he got it through vaccine-shedding or by a random encounter with measles. 20170708_082751How has he been handling this?  Not well.  It was a huge setback, not just physically but psychologically.  For a little boy who’s been through so much.  This was just too much.  Several times, when the pain was really bad, he talked about just wanting to die so he didn’t have to be suffering anymore.

As a parent there just isn’t much worse.

We are holding to our faith and the power of prayer.  We tell Gabe continuously that he is going to get better.  There is a light at the end of the tunnel.  That God loves him and is going to cause all this suffering to work for his good.

He’s still very much in the thick of it so if you could take a moment and pray for his complete healing, that would mean so much to us.

Thank you.

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Update and TSW Treatment

Gabe started topical steroid withdrawal in mid-February of this year so he is 4 months in. 19113521_10158905728715074_8900016741876609406_n

The bright red skin of the first two months has faded and now it just looks like he has horrible eczema/was in a car crash.  The areas that still look really awful are where we applied steroids the most and longest- wrists, feet, ankles and legs.  His face is flaring though we never really applied steroids and he never had eczema there.

His energy levels are still maybe 35% of what they used to be.  He still spends a lot of time sitting in his favorite spot, the recliner.  He is able to be active and enjoy some quality of life thanks to some supplements we do everyday.

Right now what is really helping him is astaxanthin.  It’s a super potent antioxidant that is reportedly 6,000 times more powerful than vitamin C!!  I carry him out of bed in the morning and after breakfast he chomps up a 12 mg capsule of astaxanthin and within 10 minutes he is feeling 80% better and is able to get up and run around and be a normal kid.  His mouth is perpetually stained orange but it works!!  Astaxanthin is a naturally occurring antioxidant found in red algae (and sea food).  It’s what makes flamingoes pink!

We still give him CBD oil (yes, from marijuana) when his pain and anxiety levels are very high.  We give him 3-4 drops and he holds it in his mouth for 30 seconds before swallowing.  It really helps him and the benefits go behind pain relief.

We also give him detox baths every other day.  Epsom salts, dead sea salts, lavender oil and sometimes a bit of bentonite clay.  He likes the water very hot and even though it usually stings at first, he never wants to get out.  It’s the only place he doesn’t feel pain or itchiness.

Gabe also take probiotics and drinks a lot of kombucha.  He is constantly asking for fruit so we try to stay stocked up.

His sleep is still a nightly struggle.  So 1-2 times a week we give him 10 mg of hydroxinine to help him get some uninterrupted sleep.  We get a break and he gets to sleep through the night without shredding up his skin.

I just ordered liviaone topical probiotic spray and I am pretty excited to try it out.  I really think it will help Gabe heal because of so much of what he’s been through (similar to most people with eczema/TSW) destroy good bacteria on the skin- the steroids, the antibiotics, and bleach baths…. that I really feel he will be able to heal much more quickly with the introduction of healthy bacteria to his skin.

What I’ve tried that hasn’t been successful-

A high grade sodium bicarbonate (baking soda).  There is a lot of buzz about safe soda helping people heal very quickly on the TSW pages.  Problem is, this stuff is super expensive and hard to get.  I tried what seemed to be a similar alternative but without success.  I haven’t ruled out safe soda but it’d be painful to spend $60+ on a small contained of baking soda.

Essential oils.  I’m a huge user of them.  I’ve used them near daily for the past four years.  I just can’t put them on Gabe because his skin is so sensitive that they make him worse.  A couple drops in the tub is ok, applied topically just seems to be too much.

Homeopathy.  Granted we went right in the beginning and we were exhausted and overwhelmed.  We left with like 20 supplements all with complex directions.  Half of them were pills that he couldn’t even swallow.  It was basically a waste of $500.  It probably would have worked better later on in his treatment and if it was more simplistic and doable.

 

Suffering and Heaven

18920650_10158894564500074_8516742202078951748_nYesterday I took just Gabe out shopping.  I don’t often get to spend alone time with him and I was reminded what an amazing kid he is.  He has such a tender soul.  He wants to run an orphanage when he grows up… but he also wants to drive a Ferrari, so… 😉

We had a fun time, just the two of us.  On the way home he kept asking me about Heaven and what it’ll be like when Jesus comes back.

I explained to him that Jesus will appear in the sky with great glory, riding the clouds.  That every eye will see him, even those that pierced him.  That we will rise to meet him and be changed, to be like him.  That there will be no more sickness, death, pain…

I got choked up and so did he.  He said, “Mom, I can see him coming.”  I said, “honey that’s the Holy Spirit showing you that it’s true.”

You see, just the day before he had been in a lot of pain.  In between tears and sobs he had asked, “if God loves me, why am I suffering so much?”

The conversation, and the sweet presence of God, was something we both desperately needed.  Something that I need more of.

In my own suffering I tend to turn away.  I feel like I can’t take anymore disappointment at times, without losing hold of my faith.  But yesterday, it was like He peeled back the curtain obscuring eternity and gave us both a glimpse of our future and the end of suffering.  I felt a glimpse of the eternity and wonder awaiting us, and looking over at Gabe’s tear-filled eyes, I know he did too.

I know that Gabriel is being molded in ways I can’t even begin to comprehend.  I know he has a huge call on his life.  Even at the age of 8, there is a level of tenderness, empathy and hunger for knowledge of God that is amazing…. probably as the result of all the suffering he’s had to endure.

We can got lost in the hardships we face but we need to remember that life here is short and eternity is long.  We can’t choose the trials but we can choose how we face them.  Our God loves us.

 

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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.

 

Grunge and Depression

Don’t worry, this isn’t going to be a “there’s demons in the rock music” type of post… just some random reflections and what’s been rolling around in my head lately.

Just within this past week or so I have been coming to grips with the fact that I have depression.  I think I’ve always put my depression in the context of “overcoming” just because that’s how I’m wired.  I’m an INFJ and part of that I am always aggressively looking for ways to improve myself, including my mental health.

“Feeling sad?  Feeling down?  Nothing a good workout and chocolate protein shake can’t fix!!”

Recent events have brought it more clearly into focus.  I have depression.  I’ve probably had it since I was 13.  I usually manage it well enough through healthy coping mechanisms (and let’s face it, sometimes unhealthy ones).  I’m a sensitive person, I think and feel very deeply.  I naturally tend towards melancholy.  Out of all 4 of my siblings and I, I think it is safe to say we all struggle with some degree of depression and anxiety every single day.

There is certainly a genetic component as well as a very real spiritual one.  I do struggle with depression however I do still hear from God, I do still feel a great deal of happiness in my life- because of my relationship with Him and all the gifts he has showered down onto my life.

I can honestly say I don’t think I would have survived my depression without God breaking through into my life.  “the people living in darkness have seen a great light; on those living in the land of the shadow of death a light has dawned.” Matthew 4:16

With the passing of Chris Cornell I can’t help but reflect on my past and the impact depression has had.  I was only a kid when the grunge movement was big but my older siblings were really into it.  When I got into my teenage years the angst and authenticity of the music really spoke to me.  My favorite band was Soundgarden…and then of course, Audioslave.

Chris Cornell was, like many artists, a sensitive soul that battled his own demons and dealt with depression.  We don’t know for sure if his death was a suicide, but it seems likely.  He likely fought the depression and the darkness the best he could, until he couldn’t.

I’ve gone through major crisis’ in my faith.  When I came to God I knew I had major issues, deep pain in my heart.  I knew I needed healing.  I knew I carried a shame around in my soul that tainted every part of my life.   I sought God with everything, I sought healing.  I prayed, I fasted, I wept…. for years.  Yet I still feel such angst in my soul.  I still wake up everyday and feel the need to prove my worth.  I still fight to keep the depression at bay.

I really don’t like offering up “untidy” blog posts.  I really like to post when I’m pumped up on a spiritual high with God and feel like I can offer inspiration.  Those times are true and genuine but they certainly don’t capture the whole story.

I feel like I want to be a little more real in my writing.  Because, well…there are no “successful Christian makeover!” stories, at least not in the sense that we get so healed and delivered that we live in a sort of spiritual reverie, immune to the flesh nature, with a perfect grin and perfect family until Kingdom come.

It just isn’t reality.

In being thrust into a caretaker care for my son, a lot of the self-medicating (or coping, tomato-tomato!) tactics I’ve used have been really messed with.  The things I use to prop myself up (don’t we all have them?) where suddenly taken or just not enough.  I’ve realized my motivation for serving God is actually very little when I am really hurting and my prayers seem to go nowhere.  “If we are unfaithful, he remains faithful, for he cannot deny who he is.” 2 Timothy 2:13

Just today I was feeling down about something when I heard God speak to my heart about how He loves me.  He loves the “hot mess” me.  I remembered a time, when I was in my early 20’s and seriously depressed.  I couldn’t love myself and couldn’t imagine God could either.  I stopped praying.  I remember sitting on the dusty carpet in my bedroom near tears when this song came on the radio… https://youtu.be/Ek4I6BeMQIs

I just knew that song, at that moment, was for Me- from God.  I bawled and bawled.  It was a real moment in my life where his light burst forth into the deep darkness I found myself lost in.

I struggle with wanting to wrap everything up into a neat little Christian bow but I really can’t.  As my 8 year old was asking me why God has allowed him to go through these years of suffering, there really aren’t any easy answers.

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Copper the dog looks sad for Gabe too~

I think in this life the pain is real.  The hurts are real.  Especially the hurt we all carry around in our hearts.  So much of life seems random, chaotic even- but for the moments that the light of God breaks in.  Somehow we survive and come out a little softer, a little stronger.

It’s ok to be hurting.  It’s ok to have questions.  As long as those pangs and hurts ultimately lead us to our Healer, into a deeper relationship with Him, as he slowly unravels the hurts and shines his light into our deep darkness.   And if we take a detour, He will come and rescue us when we are ready.

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!!

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