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.

 

Rebirth

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

Getting through this Season

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

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

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

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

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

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

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

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

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

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

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

 

 

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.

 

 

 

Dealing With Holiday Weight Gain

I never know how to open (or close) a blog.  It always feels awkward.

Ok, so here goes- My name is Sierra and I am a recovering anorexic.  Bam.

I’ve been in recovery for a long time.  I’ve had babies.  Weight has been gained.  Weight has been lost.  Stretch marks have happened.  So has a lot of hard work and personal growth.

I was at a sweet spot, weight wise, for me.  Somewhere I can be comfortably, at which my body is happy and the crazy is generally kept at bay.

Well, I’ve been enjoying lots of good food and kicking back breve iced mochas at work and a couple extra pounds have appeared as extra insulation on my tummy and hinny.  I stepped on the scale and faced the music and indeed, it wasn’t bloat or my imagination.  Sadface.

Instead of going into pyscho- anorexic mode and beating myself up I’m handling it much differently.  I stared at my body in the mirror and saw all the things I do like.  I (man this sounds so cheesy, but go there with me) affirmed my body.  I bit bigger than I want to be, but it’s still my body and I love it.

However, I don’t want those couple extra pounds to gain long term squatter status so I do have a loose plan in place.  I’m going to hit my strength training workouts hard.  I’m going to cut back on sugar and empty carbs and focus my diet on high quality protein and fats.

I’m not going berserk or punishing my body.  I’m approaching it from the standpoint of treating my body as a temple to be treated with care and respect.

The scale will go back to normal and I’m not going to stress about it.

For many of us who have struggled with eating disorders- a lot of it stems from having an intense (obsessive) personality with a heavy dose of perfectionism.  I realize now that this can be a good thing.  I am probably always going to be obsessing about something.  I’m probably always going to have some discontent in my life, striving to be better.

The times in my life that I have been the happiest have been the times I’ve focused all that obsessiveness on the only one worthy of all my devotion- Jesus.  So while I strive to do well by my body, my main focus is keeping the focus firmly where it belongs.

 

My Power Source

I haven’t written in a while.  Summer is always a busy and chaotic around here!

I also switched jobs.  Now I work part time as a barista at a Target Starbucks.  Honestly, the job I’ve wanted for a long time.  I love Target and I love Starbucks!  I also love getting a discount, yay!  13626415_10154249884502429_8547029261097152568_nMy friend snapped this on my first day.

My husband’s brother and his family visited for the first time from Virginia a little over a week ago.  It was incredibly special.  We had a blast, hanging out and doing tourist-ey things with them.

Tomorrow is a big milestone for me.  I’ll be turning 30.  I’m kind of sad to leave my 20’s behind, but older = wiser, right?

I watched the movie ‘Miracles from Heaven’ a few nights ago.  At about 20 minutes in I started crying and couldn’t stop.  It just touched so many nerves for me.  The child in pain, the mom losing hope- it’s definitely been where I’ve been at for a long time.

My 7 year old son, Gabriel, has had severe eczema for years now.  It has been so tough for him.  Lately we haven’t been letting him play outside because he reacts so strongly to the allergens.  His eyes are always bright red lately.  There’s times where he can’t sleep because the itching or pain is so intense.  And all of this with daily anti-histamines and steroids and expensive lotions.  It feels like a never ending nightmare.

Watching him suffer, day after day, had really hardened my heart towards God.  Gabe had asked me, “why did God let me get eczema?” and I’m at a loss for words.

No, it isn’t as serious as what the Mother was facing in the Miracles movie.  But his condition has been devastating for him.  To the point that when we went to meet his cousins (in 90 degree heat) he cried because he wanted to wear a sweatshirt to cover up all the redness, bumps, and open sores.  He is also limited in his daily ability to just be a kid because the itching and allergies make him so miserable.

We’re still going through it.  There’s no end in site.

I think most (if not all) Christians face a make or break trial.  Something devastatingly hard, something that never seems to end, something that hits home.  Those times test what we know to be true.

God was speaking to me through that movie.  I realized I’ve been ‘under’ the trial and the devil was running roughshod through my life.  In my pain and sadness I was distancing myself from God, my power source, and leaving myself very weak and vulnerable to attacks from the enemy.

“Now if we are children, we are heirs- heirs of God and co-heirs with Christ, if indeed we share in his sufferings in order that we may also share in his glory.” Romans 8:17

I have resolved to hold tighter onto Christ through this.  I believe in miracles.  Especially the quiet ones, where God uses tough circumstances to do an incredible work in us.

My sweet boy, with his Daddy….

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Don’t let your Song be Silenced

This past year, going through some stuff; I allowed my worship to be silenced.

I was worshipping God and was filled with joy and his Holy Spirit this week.  I realized for much of the past year I had been silenced by worry, doubt, fear, etc.  And my joy and passion for God had really waned.

If prayer and bible study are our daily bread than worship is the olive oil.  Literally- oil in the Bible signifies anointing and the Holy Spirit.

I know for me that nothing connects me to God more than heartfelt worship.  I feel him work in my heart, he reveals things to me, I find my purpose as one created to worship God.  Music_Worship

The enemy wants to silence our worship because it is so powerful.  The joy of the Lord is our strength and we never tap into that more than when we enter into worship.

When we exalt God our problems are minimized.  We get a proper perspective and are able to enter into his peace, even if our circumstances don’t change.

I want to make this year a year of purposeful worship.  I want to make my home a sanctuary.  I want my children to grow up in the presence of the Lord.  I want my heart to be ruled by his peace and his presence.

“Worthy are you, our Lord and God, to receive glory and honor and power, for you created all things, and by your will they existed and were created.” Revelation 4:11