Thursday, 9 August 2018

I came across this beautifully written article given by lds living (www.ldsliving.com), Danielle B. Wagner wrote the article (Jul. 23, 2018)

This spoke to my soul and I immediately felt to share it wide and far because PAIN is something we all have in common and some point or another.

“Why does God intercede in some moments, but not others? Why does God allow such pain and horrible events when there are many ways He could test our valiantness or increase our strengths?
It's because pain and suffering have a greater purpose. Pain is purifying. Suffering is a blessing. As President James E. Faust stated, "There is a divine purpose in the adversities we encounter every day. They prepare, they purge, they purify, and thus they bless."

In addition, pain deepens our ability to feel joy, empathy, love, and charity.
I think the overarching reason Heavenly Father allows us to suffer is that He is lovingly helping us develop a greater capacity for pain. Undoubtedly there are millions of moments Heavenly Father has shielded us from hurt or torment, but like any loving parent, He understands that if we are to reach our eternal potential, we must learn how to confront and overcome devastating fear, sorrow, and pain...”

For those interested: both of my children are doing well: Eden has a bit of rough skin on her feet but that is about it ... no eczema flares ... she is a beautiful, well adjusted, functional, happy & completely normal teenager.


My son, Caden, is also doing well. I home schooled him for the past year in an effort to help him "catch up" and though he will still be one year behind his peers ... we both feel that this is exactly the right spot for him.



He is growing up and entering pre-teen years. He still struggles with reading (brain was injured on that side of his head), writing (due to the stroke that he suffered), processing, speed etc. but other then that ... he is as normal as any other child.


Even though those years of tsw and tbi (my little girls topical steroid withdrawal and then 2 years later my little son's traumatic brain injury) ... I can honestly say, I am grateful for the opportunity of growth the Lord gave us during that time ... growth, understanding, compassion, faith, humility, hope etc that could have come in NO other way.

I want to close my blog post by re-emphasize what the author had to say in that brilliant article:
He (God) is lovingly helping us develop a greater capacity for pain...He understands that if we are to reach our eternal potential, we must learn how to confront and overcome devastating fear, sorrow, and pain...”

Here's a picture of my children: happy, healthy, strong and pretty much normal :)


 Caden (above)



 Eden (above) with her perfectly healthy skin

Thursday, 10 August 2017

Eden's skin almost 5 years later

Eden is doing fantastic!

She has a little bit of eczema (I think she might have this for the rest of her life as she was born with a little patch under her neck). Her feet and folds of her arms get irritated at times but it's NOTHING in comparison to how it was.

She can function and have a normal life.

She can use normal lotion, soap, detergent and nothing irritates her skin that makes life unbearable for her.

What triggers an itch-craze is stress: she scratches and scratches and scratches when she is stressed out.

But again ... there is NO comparison to the hell she went through during TSW.

She is a happy, thriving, normal teenager today and the world is her oyster.

Going through TSW is worth it ... it is painful, it is long, it is lonely and heart wrenching but WORTH IT and it does not last forever.

Eden lasted for 2 years and then improved more and more as time went on.

Now, 5 years later, it's a distant memory that doesn't haunt us anymore but certainly taught us valuable lessons and mostly ... helped us heal.






Saturday, 2 April 2016

Update wrt Caden

Most of you are aware of Caden's horrific injury last year April: he was attacked by a stranger who hurled a brick through his father's motor vehicle while they were driving ... the brick hit Caden against the side of his head and he suffered a traumatic brain injury and stroke, he was on life support and in a coma.

http://www.sabreakingnews.co.za/tag/caden-slabbert/

When he finally woke up he had to relearn all the skills that use to come so effortlessly to him, such as: eating, drinking, sitting, talking, walking etc.

He walked around for 10 months without a skull on the left side of his head and in January this year he underwent a major life threatening operation where they tried to replace the skull and reattach the membrane of the brain.

Unfortunately his own bone was too old and shattered so they ended up using titanium as a replacement.

The operation turned out successful despite not being able to use his own bone and he is finally back at school (he attends a school for disabled and learning disability but he is doing exceedingly well and should be back in mainstream by next year).

Here are some pics of the operation in January and how Caden is currently looking, we also had a welcome home for him and made a special video for him.... I guess what I am trying to say in all of this is (In Jeffrey R Holland's words) "BELIEVE IN MIRACLES ... HOPE IS NEVER LOST." and "if the cup don't pass ... drink it."











Friday, 1 April 2016

Update wrt Eden

It's been a crazy crazy CRAZY 3 years!!

Eden started with tsw 3 years ago ... and I am so happy to say that she is doing remarkably well and have blossomed through every one of her trials.

She still has a bit of eczema behind her knees and folds of her arms ... but that is all it is ... eczema.
We don't use anything for it ... and she seems to be fine without it.
Her skin is still very dry but no more shedding, oozing etc ... I can confidently say tsw is long gone and well in the past.

I am considering a anti-candida diet (the whole journey: Christa Orecchio's cleanse) because my gut tells me the reason behind Eden's stubborn eczema spots is candida related.

Here are a few pics of  how Eden's skin is currently looking:




Tuesday, 2 June 2015

Bitter-Sweet

2 YEARS TSW ANNIVERSARY AND HER SKIN IS LOOKING REALLY REALLY GOOD!!




Eden's been at school every single day this year (so far) with no major flares ... no major skin issues... just doing really well...enjoying life ... finally feeling peace, joy, healing ... and thriving.

Until

1 month ago ... on the 30th April, something terrible happened ...  Eden (all of us) nearly lost Caden (her brother, my sweet, innocent little 8 year old son).



They were on their way to have a holiday weekend with their dad at some resort, driving on the highway when a man stood on the side of the highway and threw a brick into the traffic ... it smashed through the window (they were driving at about 120km/ph .. the brick hit my little 8 year old on the left side of his skull (probably at 200km/ph), crushing his skull and smashing into his brain.

Eden was in the car when this happened.

A SENSELESS ACT OF VIOLENCE!!

My beautiful boy was in a coma, on life support, ventilator and in ICU for 3 weeks ... the doctors did not think he would survive ... BUT HE DID!!

It was national news ... and he is currently in rehab ... where he will remain for 3 months.





.
God has been so kind and merciful to us ... he spared our little boy and brother ... and we have all felt His hand in our lives this past month ... we have felt how the Lord strengthened and carried us and all I can say is that NEVER EVER EVER EVER doubt the Lord's existence .... He lives! He loves us all and He fights with us ... and when we can't carry on anymore ... He fights for us.

Caden is now in rehab, having to learn to walk, talk, eat etc .... basically learn to do everything over again.
But he is going to be okay ... yes, it is a long road (just like TSW) ... but one thing TSW have taught me is that ... THERE IS LIGHT AT THE END OF THE TUNNEL ... AND ... what this particular trial with Caden have taught me is that MIRACLES HAPPEN!

Stay strong fellow tsw warriors ... you are being prepared and strengthened ... to complete wonderful missions in life ... I feel tsw have prepared me for harder trials ... it has taught me patience, endurance, courage, faith and submission... this affliction will end ... and you will be stronger and more beautiful (inside and out) in the end.





Tuesday, 10 March 2015

22 months

Just a few pics of Eden's progress.

She is now 22 month tsw and have had a wonderful first start to the year with only minor flares here-and-there.

Unfortunately the skin at the back of her legs are still irritated and full of spots as well as her lower back and inside of her arms BUT we are making progress and getting to the end of this chapter.

In addition to just ... waiting it out ... I have changed our diet tremendously. Following Dr. Alan Christianson's, the adrenal reset diet and have been able to keep my family healthy to a point. 

WE DO CHEAT ... but as a general rule we eat very healthy.

Eden's also started dancing and piano lessons this year and she's so excited about it ... she finally feels like there is more to life than illnesses.

We have come a long way.
So grateful.



Friday, 26 December 2014

Merry Christmas

Another year is basically done and dusted ... 19 months since we've last used oral or topical Cortisone (Steroids) for Eden's eczema ... her skin is certainly far from perfect but we are one step closer to complete and final healing.

She's visiting her dad at the moment ... they are all going to the coast ... some sun, sea and fresh air can do her good.

New year she (in fact ... we are all) starting a healthy, clean diet... many tsw sufferers believe it's only time ... I completely agree with that ... but in our case I have a uncomfortable feeling (one that won't leave me) ... perhaps intuition ... that Eden's digestive system is a complete mess and needs some healing as well....hence my obsession with Sean Croxton and Chrisa Orrechio's digestion sessions, I feel like round 2 of her healing have now started.

Since  birth she's had reflux and other issues ... n 11 years ... she's never had a period of constant.normal.stools. Time to get to the root of this problem.

Anyway, here's a thought for this beautiful Christmas period and Merry Christmas & blessed, prosperous, healthy 2015 to all:

President Thomas S. Monson says: “He will not always take your afflictions from you, but He will comfort and lead you with love through whatever storm you face.”




Tuesday, 18 November 2014

Underground Wellness

My new obsession!!
I am very quickly developing an absolute passion for this!

http://undergroundwellness.com

Have learned sooooooooo much from the sessions  ... from GMO foods to leaky gut to allergies ... parasites, candida .... and how food is medicine ... and which food are the best medicines ... and add to that how mental health and ALL other health related issues are connected to a healthy gut/digestive system so so sooooo much wisdom that they have shared.

SO.

Now I have decided to start a complete new diet for our family ... going to first try it out on myself and then the rest ... obviously Eden with her skin condition (and my son, Caden who has severe allergies) will be my priority.

Going to take some time to draw up a diet plan ... a HUGE part of this lifestyle/diet change involves planning ... so I will take the next few weeks to plan it.

Big changes will happen in our lives as from next year ... let's just get the December festivities (Christmas and birthdays) out of the way.

With regards to Eden's progression ... THANKFULLY the 18 month flare have passed and her skin is now healing again ... but it can strike any time again ... she's writing exams and have been studying like crazy which obviously adds stress ... and results in more skin issues ... but, so far it wasn't too bad and thankfully she only has 3 non-study subjects left. WHOOOHOOO.

A few pics of Eden's skin ...
Her legs are always the worst ... the pictures don't do it justice but you can get an idea.


The back always has sores and a redness with thick skin behind her knees 


The last flare resulted in her scratching chunks out of her skin like this.


Having said that ... she is a lot happier then she has been during the past 18 months and slowly but surely we are reaching that final destination of healed skin.



LOVE THESE TWO QUOTES:












Sunday, 2 November 2014

FLARE LASTING 3 WEEKS

Each one of Eden's major flares this year have lasted 3 weeks ... this past one was the same but it hit hard and fast and caused so much skin damage that it will take at least 2x or 3x that time to heal and start looking normal again.

I will post more pics soon .... just in a rush at the moment ... wanted to say that the flare have past ... one down ... ??? to go.

Every time a flare passes ... I feel like I can breath again (it's so weird, like I hold my breath every time the flare hits ... it's sooooo exhausting ... and I'm not even the one suffering with the condition).

Eden's brave through all this ... still gets down and despondent at times ... still dreams and longs for the day when she's normal and able to do the stuff normal kids her age does ... but until then .... we will "bite the bullet".

AND

GOOD LUCK EDEN ... (starting final year exams in the next 8 days).
She's been home this entire final term of school so lots to catch up on.

Once again ... so grateful for the understanding we get from her school (particularly the principal) and her two friends that bring homework and help her where I can't (with schoolwork) ... thanks K & S xxx

EDEN HAVE SOME SPECIAL SISTER TIME





Monday, 20 October 2014

18 months Flare

Haven't been blogging for a couple of months due to ... our new family member, Meya born early August.

We have been so blessed because the first 2 months of her life was absolute bliss with Eden's skin ... and then they went on holiday to the bush and she came back with the flare of all flares (see last picture) ... she is absolutely distraught  but at least we know she can (and will) heal again.

She's in so much pain at the moment ... just staying in bed ... not going to school (they are as supportive as always and some of the kids are as big bullies as always ... not even worth mentioning what is being said to Eden every now-and-again at school ... you'd think kids will get use to the fact that she's "different"from them and let it be by now ...)

Anyway, at least she can stay home and recover.

Below are a few of the pics taken of her the past 3 months ... she's really had a good skin period.

Holding baby sister, Meya for the first time


Kids with Oumi (granny)

 Playing with cousins

Enjoyed a music festival ... with SA celebrity / singer Bobby van Jaarsveld.


All dressed in white for little sister's blessing


Sadly, she started breaking out again 2 weeks ago... hoping it will lift soon.


Love is the only thing stronger than fear ... and in this case FAITH & HOPE as well.




Wednesday, 23 July 2014

FINALLY ..... a break!

Since March this year Eden have consistently flared every 2 to 3 weeks ... but we have finally had a break!! We are at the 4 week mark without any flares and her skin is looking sooooo good ... better than it has in months!!
She is now 14 months TSW.

We stopped using all ointments and moisturisers / creams ... and only added a few drops of lemon grass oil (suggested by Isaiah's mom .... genius!!) to a small tub of pure zinc ointment ... can't believe the difference it has made!

We have basically gone through moisturiser withdrawal but felt it still essential to apply this lemon grass / zinc ointment balm to the infected areas as the lemon grass is an anti-fungal and antiseptic. Her legs and arms are still full of sores from the previous flare (the last flare have lasted for an entire month so, you can imagine the skin damage...) but who's complaining??? We are just happy that we have had this break ... Eden is so relieved and all the kids and teachers are commenting on how beautiful her skin is looking ... let's hope this is the beginning of the end of this long journey.

Either way ... we are still extremely grateful to see improvement in body, mind and spirit.






Tuesday, 3 June 2014

Lymph glands

Okay, so I know everyone that experiences TSW are having enlarged lymph glands ... which thankfully disappear once they are cured.
BUT
Eden's lymph glands have swollen and been popping up everywhere ... behind her ears (it's almost 2cm big), under her armpits, in her groin area, on the side of her ribcage ... that one stands out like a marble.

SO,

my GP ... who completely supports and respects what we are doing have suggested that I put Eden on a course of antibiotics ... just to see if the glands will go down (or some of them at least) ... and if there's no improvement by end of next week then she needs to have blood tests done to rule out any other underlying conditions.

I'm not too stressed about it ... sure she will be fine.
So, she's currently on some antibiotics (urgh) but, I see it as an experiment...there's nothing to lose ... just another flare closer to the final flare....so in my husband's words:  "bring it on"  .... (yeah right lol)


Wednesday, 28 May 2014

13 months flare

I've noticed a pattern since March this year: she flares every 2 1/2 to 3 weeks and it takes at least a week before the flare starts calming down and she can return to school.

Here are some pics of her skin (currently): 



'

The bottom pic of her legs were taken  in a darker area in our house  ... she's not really that purple.

I posted 2 pics of her legs ... the one below was taken today and the one underneath it was taken a year ago ... seems like when she's flaring her skin looks almost exactly the same as it did a year ago.
This is so incredibly frustrating ... I've read about so many people on the forum that are still experiencing these horrible flares 24 to 30 months into their withdrawal.... I truly hope life will turn around for Eden now ... in the very near future ... this has been such a long road and I have honestly thought that by 1 year we would start seeing improvement on a consistent basis ... but instead I've seen flares that come consistently every 2 to 3 weeks ... 

What I can say (on a positive note) is that her skin recovers a lot quicker after each flare than it did a year ago. 

So despite all my whining ... there's still progress and things to be grateful for.



Her most recent flare:


1 year ago

]

Tuesday, 13 May 2014

Progress

Even though Eden is far from healed ... I have noticed large patches of skin clearing more and more on her legs) ... her legs and arms have definitely had it the worst so I am truly grateful to see such improvement.
At the moment it's just the front of her legs ... the back of her legs still need a lot of healing BUT who's complaining? Certainly not us ... seeing where we were and where we are now.

Below is a picture taken at 7 1/2 months: 


And this is a picture that I took on Sunday (1 year mark) ... AMAZING IMPROVEMENT!! 


We are slowly but surely getting there!!! Whoohooooo