Face like Flint

I just got kicked out of an eczema support group on Facebook.

I was acting as sort of an awareness raising vigilante for the dangers and prevalence of topical steroid addiction amongst those who suffer with eczema.

Like, “LOOK!  Guys I have the answer.  You can get completely better!!  Your steroids have been causing your worsening condition all along.  Now you just need to go through this hellish withdrawal!!”

Obviously I wasn’t met with much enthusiasm.  The people who administrate the group are familiar with TSW and for whatever reason, have decided against it.  Not only that, but because of the suffering associated with it, they label it as “dangerous” and “misguided” and the people, like myself, who try to sound the alarm, are promptly booted from the group.

My reasons for wanting to warn people is simply that I wish someone had warned us before our level of dependence on steroids got as bad as it did.  We could have avoided so much pain and suffering for our son.

But the road is a hard one, no doubt.  And many try for a time, before going back to steroids and concluding that TSW doesn’t work.

I’ve gotten some unexpected feedback sharing my blog within my TSW support group.  People commending my husband and I for doing a good job.  It is great, in a sense, mostly because it’s vindication.  When we entered into this, it was going against medical advice.  It was going it alone.  It was entering into some pretty bleak and abject suffering.  We felt very defensive about our decision because while we knew we were doing the right thing, we felt a lot of heat over it.

But at this point it is finally paying off.  My son is getting better.  There is a spark of vitality and health that strengthens every single day.

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He was thrilled to get a McChicken before school~

In our case we found the answer to our prayers, to our searching, but it meant pressing through a whole lot of pain and difficulty.  “As the time approached for him to be taken up to heaven, Jesus resolutely set out for Jerusalem.” Luke 9:51  Another version says, “He set his face like flint.”  Jesus knew full well what he was getting into and he pressed into it.  He was resolute.  Because he knew the joy set before him.  He knew the end game.

 

My husband and I never wavered, not once.  We knew that God had led us to this point.  We knew Gabe had to go through this withdrawal.  We were of one mind, and there is so much power in that.  Gabe, young as he is, he understood and was 100% on board too.

We’ve gone through a pretty extreme trial, but, we all go through stuff.  We all deal with pain.  That’s why we need hope.  We need to know the end game.  We need to know our Shepherd.

Often, the only way out is through.  We have to be resolute.

“Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off every encumbrance and the sin that so easily entangles, and let us run with endurance the race set out for us.

Let us fix our eyes on Jesus, the pioneer and perfecter of our faith, who for the joy set before Him endured the cross, scorning its shame, and sat down at the right hand of the throne of God.” Hebrews 12:2-3

I know there are those who don’t get their healing.  At least, not here on this earth.  But we know the end game.  We know in whom we have believed.  We know this life isn’t the “be all, end all”.  It’s like a cosmic waiting room we bide our time in until we can get to the real deal.  And hardships help to wake us up to the eternal consequences and weightiness of how we live our lives here while we wait for the children of God to be revealed.” Romans 8:19

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Beginners Guide to TSW

I’m writing this guide to help the many who are starting their TSW journeys.  I’m writing this because you won’t get much help from the medical community or even alternative medicine practitioners.  I’m writing this purely to help.  I am not affiliated with any of the products I recommend.

I’ve read blogs and watched videos from people who healed quickly and are giving out advice but they had only a short period of T.S. (topical steroid) usage.  Well, no wonder, right?  I’ll give a short back story so you can know that we have dealt with severe TSW.

My son used hydrocortisone for a couple years and then fluocinonide for about a year.  During this time his health deteriorated.  He developed asthma and had multiple rounds of pneumonia.  He always had dark circles around his eyes.  When we asked his dermatologist about it she prescribed protopic to rub onto his eyelids. (insert forehead slap here!)

After a month on oral prednisone in an attempt to clear up very serious pneumonia, Gabe developed full scale red skin syndrome.  At that point he was getting red rashes on his torso and they would go away if we applied the fluocinonide.  Right before we discovered topical steroid addiction we were applying the super potent steroids AND protopic and sealing it up with plastic wrap in a desperate attempt to get his skin under control.

Gabe was exposed to a lot of steroids and went through an extreme withdrawal. When we discovered TSW (or RSS or TSA) we knew we had found the answer but had no idea what to expect or how bad it’d get.

In these two pics you can see how he looked in the first week.  His skin turned bright red, obviously.  You can see on his neck in the second pic how bad the oozing was.  It was running off like water.  I’d go to pick him up and his clothes would be practically drenched.

This is normal TSW and happens because the steroids work by shutting down the blood vessels close to the skin.  It calms the bodies own immune response and seemingly fixes the problem.  But when you’ve used for a long time and you suddenly stop, those blood vessels flood with nitric oxide.  You get bright red, angry, hot, oozing skin. Though people of color never get red skin, their skin gets several shades darker.

At this point we brought him back to the dermatologist.  It was a mistake.  Don’t expect much help from your derm at all.  They wanted to hospitalize him and slather him head to toe in steroids with a steroid drip to treat his “infected eczema”.  We stormed out.

We were able to find a much more sympathetic dermatologist who wrote us a school note for why Gabe couldn’t go to school.  Even she wouldn’t come out and admit it was TSW.  She wrote it as “severe eczema”.

You need to find doctors you can work with but don’t expect any miraculous breakthroughs or much help.  The dermatologists do largely know about TSW but either they don’t care or they hide behind a thick wall of denial.  They aren’t about to completely overhaul the way they practice and admit that their care has made so many people not only worse but desperately ill.

If you’re a parent of a child going through TSW it’s important that you establish that you are seeking medical attention for your child.  Make it clear that you aren’t refusing treatment, just steroids.  Ask that steroids be listed as an allergy on their chart.  Call their school and do everything you can to work with them.  You need to cover your butt because there are nutjobs who troll support groups and report parents to CPS.  You may even face a lack of understanding in your own family.  You need to have this proof that you are getting your child the help they need medically because the last thing you need is CPS opening an investigation.

Speaking of nutjobs…avoid the Dr. Aron people.  Not all of them are like this but there are a select rabid few who troll the recovery groups and try to deter people from the true path to healing.  The Dr. Aron method is not magical by any means.  It’s a quick fix and it doesn’t address the underlying problem- the addiction to the steroids themselves!  Many of them are stuck applying a concoction of steroid and antibiotic lotion 5-6 times a day.

When you do see your doctor you can ask for prescriptions to help you through this TSW hell.  Hydroxyzine (atarax) can be helpful to get some actual sleep.  We use it once in awhile because daily use was making our son incredibly irritable and depressed.  Like most drugs, it can be helpful but it has side effects.  We have a bottle of tramadol as well, for days when the pain is just too much.  Many use gapapentin or lyrica for nerve pain.  It is also helpful to have a script on hand for antibiotics in case of a sudden staph infection.

Depending on your usage and history you may need to take an extended leave or even quit your job.  My son required so much care that I quit my part time job to take care of him.  If you’re single, you may need to move back home.  Do whatever you can to enlist help and support to help you get through this.  My son missed months of school.  We did a homebound program where a teacher from his school came out and spent an hour a day with him so he wouldn’t fall too far behind.  It was necessary because he basically spent months in this chair unable to walk. 20170518_221523

You’re going to be utterly exhausted and afflicted with terrible insomnia.  The T.S. didn’t just affect your skin.  They were your supply of cortisol and adrenaline so your body simply stopped making it’s own.  It’ll bounce back but it’ll take many months.  In the mean time you’ll probably watch every episode of every show on Netflix in the wee hours of the morning.

Just about everything you experience is “normal”  Swollen lymph nodes, chills, edema, crust, ooze…all normal.  My son swelled up and was constipated for the first time in his life the first week of withdrawal.

What you need to familiarize yourself with is signs of infection.  Google “impetigo” and “eczema herpeticum” and get very familiar with how it presents so you can catch it early if (or when) it happens.

Virtually all TSW people have a major staph (staphylococcus) overgrowth problem.  The steroids actually enable the staph to grow out of control and further colonize your skin.  The best bet in beating it is building up your immune system, not tearing it down.  Steroids are a quick band aid, and actually make the problem so much worse in the end.  Same with immunosuppressants.  You need to get healthy so you can actually heal and stop covering up the problem.  Many people do bleach baths (a 1/4 to 1/2 cup regular bleach in full tub) to reduce the staph on their skin.  We also used liviaone probiotic spray off of amazon.  The good germs help coral the bad ones.  I wash my hands carefully after treating Gabe or I get staph bumps.  I wipe down commonly touched surfaces with Lysol wipes and I clean his tub with bleach pretty frequently.  Nothing else kills staph.  Believe me I’ve gotten infections to prove it.

Regarding immunosuppresants or “immunos” this option should be an absolute last resort.  I’ve read many blogs of people who used immunos and it made their symptoms much better until they stop using them and they are virtually back to square one and need to start withdrawing all over again.

20170705_114604The absolute best thing you can do is support your health, not undermine it.  Especially since your immune function is already very compromised.  At one point my son contracted the measles from being around a toddler who had recently had her MMR shot.  That was four days of sheer hell.  So be aware that you are immuno-compromised and that risk is there.  For heavens sake don’t get any vaccinations.

After you go through the bright red skin phase you’ll go through different phases.  It’s helpful to take pictures so you can document your progress.  I took pictures of my son at his worst.  For evidence in case we ever file a lawsuit for the harm inflicted on him by negligent doctors and also to encourage us that he was making progress.

At his worst his legs were actually purple.  He looked like a victim of radiation poisoning.  20170707_204127The areas that were hit the worst were the ones that had received the most T.S. over the years.  But it really affected his entire body.  From the swelling and bacterial infections he lost virtually every single finger and toe nail.  In this picture you can see that chunks of skin were rubbing off while the skin underneath was still too raw.

In TSW it’s like you’re a snake and you shed your skin every single day.  There’s just going to be skin everywhere.  We still (8 months in) vacuum nearly every day.  I wash his blankets every day.

We use $5 fleece blankets from Walmart.  He sleeps on top of one with another one covering him.  Then in the morning I can easily roll them up (to contain the crust) and toss it in the washer.  It’s so much easier than stripping off sheets and all his bedding every day.

Speaking of laundry, switching to a free and clear detergent is helpful.  I wash my sons clothes and blankets in a natural powdered detergent and use white vinegar as a rinsing aid instead of fabric softener.  Vinegar helps deodorize and soften fabric, as well as getting all the soap residue out.

“TSWers” argue big time about the importance of diet and even what diet is best.  My thought is that the body needs the building blocks of a nourishing diet to properly heal.  This is not a time to go on a ridiculous diet.  You need extra protein.  You need a lot of healthy fat.  Avocados, grass-fed butter, bone broth, fish, nuts, etc. you need a balanced diet with the amino acids from complete sources of protein.  You also need antioxidants from fresh produce.

Because your adrenal glands are already completely slaughtered from the steroids you want to avoid further stressing them with sugar, alcohol and caffeine.  I’m willing to bet virtually all TSW people also have candida overgrowth from antibiotics and a weakened immune system.  The candida is a nasty yeast that lives on and in you and it feeds on sugar.  We noticed that our son got instantly itchy after eating sweet treats.  We cut way back and he felt much better.  We noticed his anxiety levels went down as well. Sugar feeds the yeast and it also depresses your immune system.  So it’s extremely wise to limit it, even in the form of juice and fruit if you believe you have candida overgrowth.

Probiotics can also be very helpful in healing your gut and aiding in your healing.  Other supplements we have found very helpful with Gabe have been astaxanthin (a super antioxidant), powdered super greens, vitamin D3, and CBD oil.

I see a lot of questions about CBD.  CBD is cannabinoid oil and it’s the medicinal part of the marijuana plant.  It won’t get you “high” and it’s legal in most states.  It helps with inflammation, anxiety, pain and insomnia.  It was extremely helpful in the first few months for us.  Gabe would be exhausted and in so much pain until I gave him a few drops of his CBD and he would be able to get a few hours of peaceful sleep in.  Or he’d be able to get up and move around a bit.  I ordered mine here https://www.anandaapothecary.com/shop/cbd-formulas/

We’ve just lately found Maxasorb BioActive Vitamin B12 Cream to be very helpful.  I apply a few pumps all over his body after his bath and he perks right up.  His skin is also less red since we started using it.  It has also never stung or irritated his skin.

Just this week we tried alkaline water for the first time.  I heard about it on the ITSAN support group and decided to try it.  It’s already made a world of difference for him.  He has much more energy and much less itching.  I highly recommend it.  I found our first bottle at Target and ordered a case of Essentia brand water off of amazon.

We have also done warm baths with either dead sea or Epsom salt nearly every day.  We do salt because it cleans the wounds and is very healing for stressed adrenal glands.  One trick we’ve found to get around the water stinging is applying cocoa butter right before he gets in.  When the skin is very dry even water stings.  The cocoa butter acts as a buffer until the skin can get used to the water.  The bath was great because for Gabe it was, for a long time, the only escape from feeling pain and itchiness.

I like cocoa butter as a moisturizer because it is very gentle.  It is a saturated fat so it is unlikely to go rancid.  It also has a warm, chocolately scent that can be useful in covering up that oozey smell.  I order my cocoa butter off of amazon.  It comes in a big brick.  I put in in a glass container and melt it as needed with a hair dryer in my bathroom.  It only takes a minute to melt what I need.

We’ve spent lots of money on eczema creams and potions and it’s pretty much a waste.  We used a lot of Vaseline and aquaphor early on but realized it was making him itchier and drier.

Your skin will go through a lot of changes and you need to find what works in each stage of TSW.  Generally, using products with less ingredients is better.  You can even rub something as simple as olive oil on your skin.  Whatever you use it can be helpful to add essential oils, which can act as a natural antiseptic with healing properties.  Thyme, lavender, tea tree, frankincense, and clove are all very good.  I buy my essential oils from plant therapy or ananda apothecary.  You just need to make sure that they are properly diluted. When my son is very upset I put a few drops of lavender in his bath, mixed with his bath salt.  I also put a drop of aura cacias “pillow potion” on his pillow at night.  They don’t work miracles but they do help.

Early on we also used a lot of zinc cream.  Zinc is very protective and can offer some relief to very raw skin.  We liked sudocrem (bought from Walmart online) but you can grab a good diaper rash cream and it’ll do the same thing.

Some people advocate for moisture withdrawal.  We haven’t tried it with our son, because it would be too painful and difficult.  It seems to be helpful in the later stages in teaching your skin to make it’s own oils again.

Getting through those first months is so tough but you can take comfort in knowing that so many warriors have gone before you.  At our low points I probably read the success stories on https://itsan.org/rss-images/ ten times.  My son and I also enjoyed Briana Banos funny and educational videos on youtube.

The best advice is to take it one day at a time.  No one knows how long your healing process will take but you can do so much to make it better and shorter!

At this point my son is getting more and more clear.  He is back at school for half days.  He is starting to get back to normal life.  He’s gone from this terrible “before” to this “after” in just six months. 18010182_10158675908895074_4895123062797969444_ngabebabeHe still has a way to go but we know he is well on his way to being truly healed…and tough as it is, you’re on a journey to being completely healed as well.  Thank you for reading and God bless you.

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Temple of the Holy Spirit

One focus of this blog is supposed to be on health.  I haven’t really addressed that in awhile partly because it has been so back-burnered in my life.

Lupus and other auto-immune disorders run in my family.  My paternal Grandma, Margaret Terrell, had parents that fled the hardships of the potato famine in Ireland.  Then she went through extreme hardship enduring the Great Depression as a girl.  She had 14 children and succumbed to lupus and cancer at the relatively young age of 64.

All of my aunts have auto-immune issues.  My older sister has lupus and R.A.  My aunt has done a lot of research and believes that the hardships endured in our family caused a genetic mutation and predisposition to auto-immune disease.

A few years back I was feeling awful and had a lupus test done.  The results showed elevated nuclear antibody activity, evidence my body was attacking itself, but not high enough to be in the “lupus” category.

So this thing is just simmering away in my DNA.  I feel so strongly that I have a responsibility in determining how this is going to play out.  I’ve made many lifestyle changes in order to feel better.  When I take care of myself and minimize inflammation in my body by avoiding gluten, carrageenan, soy lecithin, and preservatives, I feel really good.

But in my role as a caregiver there has been much stress and exhaustion.  My son often can’t sleep at night so I am up frequently with him.

I’ve gone back to drinking way too much coffee and eating stuff I shouldn’t.  Snickers and Reeses cups have become a major staple in my daily diet.

And I feel flipping awful.

The past few days I’ve been feeling like an extra from the Walking Dead, and looking like one.  I’ve had an autoimmune-feverish feeling.  Not good.  a_4x

I was lying in bed a couple night ago just stressing about all of this.  Thinking I needed some huge game plan to save myself from this awful state I’ve gotten into.  But the Holy Spirit spoke to me about just going back to common sense things to take care of myself.  Yes, I need the Holy Spirit because adulting is hard and common sense at times eludes me.

I don’t need 5 cups of coffee a day.  I need more nourishing meals and less Halloween candy.  I need to rest.  Just basic stuff.  I feel 100% that if I treat my body well I will pull out of this.

I also give myself grace because it isn’t all “my fault”.  Being a caretaker is just tough.  When you’re exhausted and stressed it makes more sense (in your fatigued mind) to wash down a snickers bar with espresso so you can power through the day than taking the time to eat a proper meal.

And you can do that occasionally but when it becomes a daily lifestyle, it’s only a matter of time before the crash and burn becomes inevitable.

Our bodies are amazing instruments that God has given us.  We need to treat them accordingly and honor them in a way that is befitting the living, breathing temple of the Holy Spirit.

“Do you not know that your body is a temple of the Holy Spirit who is in you, whom you have received from God? You are not your own; you were bought at a price. Therefore honor God with your bodies.” Cor. 6:19-20

We all face hard things.  Sometimes it’s written in your DNA and you feel like it’s a life sentence.  But the human body is truly an amazing creation.  We are wired to heal.  Whatever you’re facing, don’t give up.  Take care of yourself.  Do your best and God will honor those efforts.

 

Conviction vs. Condemnation

Last Sunday I had a really great day.  My daughter and I met up with my mom and her husband at the Mall of America.  I have so much fun with them.  We walk around and giggle and act silly.

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Shiloh had my mom in a death grip!

We bought chocolate at Lindt and had fresh guacamole and chips.  It was just a really great day and a much needed break from the daily grind.

As I lay in bed that night thinking about the day, I started feeling guilty.  Why?  No good reason.  I just felt almost like the day had been so fun and easy that I must be missing something.

As I lay there thinking, I felt like the Holy Spirit reminded me that God is the source of every good and perfect gift.  I shouldn’t feel some weird, misplaced guilt over having a light-hearted day.  “Command those who are rich in this present world not to be arrogant nor to put their hope in wealth, which is so uncertain, but to put their hope in God, who richly provides us with everything for our enjoyment.” 1 Timothy 6:17

Yes we should be fighting the good fight and fight against the desires of the flesh.  But it’s ok to laugh and have fun and enjoy the gifts that God richly provides.

I was folding laundry the other night when condemnation struck again.  I dump all my family’s laundry on my bed and sort and fold my way through the giant pile every night.  For whatever reason my mind always wanders to dumb things I’ve said and done in the past.  I was going over those same stupid mistakes and feeling the familiar waves of condemnation rolling over me and weighing down on me.  So much so that I just layed my head, somewhat pathetically, on my bed and buried my face in the clean laundry.

The voice of the Holy Spirit interrupted this little condemnation sesh with an abrupt, “You could have joy right now.”  Like, HELLO, you need to reclaim this time.  Stop falling into the old trash heap and letting the enemy beat you down.

The condemnation I was feeling was not from God at all.

Another instance happened today.  I had responded a bit snippily to a woman on my TSW support page.  It was a post from a woman who was only a week or so into topical steroid withdrawal and wailing about “when will this end?!?!?!  Give me at time frame and it better be days!!!”  I was incredulous and irritated because most of the people in the group have been suffering horribly for a long time and yet maintain a positive attitude.  Then she promptly responded even more snippity-ish (yes, I’m making up a word!) and back and forth it went.

Later that day when I was singing worship songs when I got the feeling I needed to apologize to this woman.  “Hmm….  That’s an interesting thought.  noooLet me file that away for later.”  Then later then day when I sat down to read my Bible and pray, I closed my eyes and BAM! “You need to apologize to her.”

I knew it was conviction from the Holy Spirit.

Did I want to apologize?  No.  Is it something God would want me to do?- Humble myself and be gracious..?  Yes.

I sucked it up and wrote her a quick message to apologize for being harsh and that I wished her well on her TSW journey.  I let it go and went back to praying.

When God convicts it is not to bury us alive in feelings of shame and worthlessness.  It is always quick and to the point and it comes with a solution to make it right.  In this case I just needed to apologize for my part.  Because that’s what I responsible for.

The good news is that when we do respond quickly to conviction it brings us closer to the heart of God.  Conversely, when we recieve the spirit of condemnation from the enemy, it does absolutely nothing to help us become more Christ-like.

We all need to be aware of the thought patterns we have in our lives that may be building us up or bringing us down.

       “For as he thinks within himself, so he is.”

Proverbs 23:7

500 Years

It’s been 500 years since Martin Luther nailed his 95 theses to the door of the church in Wittenburg, Germany. Luther95theses-808

As a girl in Minnesota I grew up going to a Lutheran church, of course.  If you live here, chances are that you’re Lutheran and you go to potlucks. 😉

What is sad and ironic is that my church was very dry and I came away with a sense that if I followed certain rules I was accepted by God.  Ironic because that was the very thing Luther was revolting against.  I was given a Bible after I went through confirmation which I kept on my bedside table at all times and occasionally attempted to read.  I remember trying to slog my way through Leviticus before I gave up.

Of course a system of rules just isn’t very compelling especially as you grow up and your world view gets very much expanded.

When I did come back to God and was filled with the Holy Spirit, the Bible came to life for me.  I read through the New Testament for the first time and was blown away.  This wasn’t dry or boring at all.  It was alive and exciting.

To me, the reformation freed the common believer to experience God firsthand.  It gave the people access to the previously inaccessible- the Word of God in the common language.  It seems shocking to us but 500 years ago the church didn’t want the Bible translated into the common tongue.  They actually rounded up all the copies they could find and burned them.  I guess they wanted to be the people’s only access to God and salvation.

“But you are a chosen people, a royal priesthood, a holy nation, God’s special possession, that you may declare the praises of him who called you out of darkness into his wonderful light.”  1 Peter 2:9

There aren’t certain believers that are elevated above the rest.   “I now truly understand that God does not show favoritism…”  Acts 10:34  Titles and positions are bestowed by people, not God.

Any believer, anywhere can go directly into God’s presence through our High Priest, Jesus Christ.  “Therefore, since we have a great high priest who has ascended into heaven, Jesus the Son of God…Let us then approach God’s throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need.” Hebrews 4:14-16

This verse is saying that we all have Jesus as our perfect priest, and therefore we can commune directly with God.  We don’t have to go to “middle men” or settle for some kind of second hand experience.

“If we confess our sins, He is faithful and just to forgive us our sins and to cleanse us from all unrighteousness.” 1 John 1:9  It doesn’t say if we confess and then jump through a bunch of hoops to earn what God has already freely given through his shed blood on the cross….

The Bible says that we are heirs of God and Co-Heirs with Christ.  Romans 8:17  Jesus was a priest, and if we are filled with his spirit, we are a part of a royal priesthood.  It’s our spiritual inheritance and it comes from God himself.

I think it is human nature to elevate the spiritual superstars of our times.  I remember doing just that with my favorite Bible teacher.  I could tell she was an amazing godly woman and such a talented writer.  I didn’t think I could ever live up to that so I read all her books and blogs and put her up on a pedestal.  I can just see God shaking his head and saying; “child, don’t you realize I love you every bit as much as I love her?”

There aren’t any rules we can follow to make God love us more than he already does.

He doesn’t want great things from us or even steadfast obedience so much as he wants our hearts.  He wants us to know him and love him the way he knows and loves us.  Consider the prayer Jesus prayed for us before he was crucified; My prayer is not for them alone. I pray also for those who will believe in me through their message,  that all of them may be one, Father, just as you are in me and I am in you. May they also be in us so that the world may believe that you have sent me.” John 17:21-22

There are many traditions and denominations in the church but none of us are saved through church membership.  We aren’t saved by communion.  We aren’t even saved by baptism.

“For it is by grace you have been saved, through faith–and this is not from yourselves, it is the gift of God….” Ephesians 2:8

My fear is that so many people are missing it.  They may warm a pew occasionally but they have no real, living relationship with their Savior.  Many will say to Me on that day, ‘Lord, Lord, did we not prophesy in Your name, and in Your name drive out demons and perform many miracles?’  Then I will tell them plainly, ‘I never knew you; depart from Me, you workers of lawlessness.’ Matthew 7:23

Martin Luther was not a perfect man, not at all.  But God doesn’t use perfect people.  The reformation was an important step into bringing us common, everyday people into the very presence of God and obtaining the gift of salvation, unencumbered by extra-biblical traditions and rules.

 

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.

 

 

 

 

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.