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.”

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:

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

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.

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.

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)

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

]

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

Anniversary

Celebrating her 1 year tsw anniversary ... with yummy taco's

CELEBRATING GOING FROM THIS .... (WHILE STILL ON CORTISONE)

TO THIS ... 1 MONTH INTO TSW

TO THIS ... 1 YEAR LATER

1 YEAR TSW

We have finally made it to 1 YEAR TSW!!!!

Eden is busy recovering from a nasty 2 week flare ... she's left with a lot of skin damage, sores etc but the flare is better ... she's still itchy... but the worst is behind us in terms of the past 2 weeks.

We have bathed her in organic apple cider vinegar and recently I've added dead sea salt. Put an anticeptic cream on the open sores and bepanthen baby bum cream on her face ... it's worked miracles for her dry skin the past week!

She's on strong probiotics and trace minerals.

I haven't given her any antibiotics yet as I really want to give her skin time to heal by itself ... but will see how it goes.

She'll return to school tomorrow and got so many supportive messages from the kids in her class and their parents saying how they will be there for her and that she must get well soon.

It makes this journey so much easier.

Below are pics I've taken last night ... still need time to heal but she looks a lot better than 2 weeks ago.

2nd week flare NEARLY 12 MONTHS IN

So frustrating!!

Eden is now in her 2nd week of flaring ... the redness have gone down and a lot of her flare has calmed down ... she's not so sore anymore ... she can lift her neck slightly again but but BUT her skin is dry and flaky and itchy and she's butchering herself ... her face is full of sores and infection and skin is peeling.

I am taking her to our GP tomorrow to get a course of antibiotics as the infections are bad...I prefer the homeopath but at the moment nothing seems to help...not even our homeopathic treatment.

Guess it's just one of those things that need to be waited out.

Here's some pics taken this morning of her face: It's so frustrating when you have come so far and have had such a lovely relative calm and recovery period and then out of nowhere a flare from hell hits.

Almost 1 Year TSW

I've heard of many people that have flared around the 1 year mark.
We have flared at the almost 11 months and now again at the almost 12th month mark ... every day her flare seems to be getting worse ... probably because she has infection now ... she is so so sore!!

I have only taken pics of her face (not her body) ... she cleared beautifully and at one stage I was almost certain we were on the path to full recovery but now I have to give into another dose of antibiotics and hope for the best.

I have seen Eden's skin improve dramatically over the past few months so I know it is possible ... healing is possible ... it's better than being in that awful stagnant phase ... just have to keep the faith.

These photo's were taken Yesterday ... I am too scared to see what she looks like today (she's still sleeping) :(

Extremely tight and dry skin

Perhaps it's the change of seasons? We are heading into winter now and every winter Eden flares really bad ... it started on Friday and her flare in terms of intense redness etc haven't actually gotten worse but the dryness is so unbearably uncomfortable, she cannot even lift her head as her neck is too tight.

I'm contacting a Dermatologist that does UV light therapy ... perhaps it's a good idea to start her on light therapy for the winter.

She's staying home for the next few days, she's very teary and miserable today ... just staying in her bed.

I am curious to see how long it takes to settle down again.

I don't have the best quality camera so the detail of Eden's skin could not be captured ... hopefully you get some idea ... even her eye lids are flaking at the moment.

 Not lifting her head too much as it hurts around her neck (skin too dry and tight)

Legs are extremely dry and flared but we've seen a lot worse and won't ignore the fact that there's definitely progress.

Doing better again

Eden had a tonsillectomy 2 weeks ago and was in bed for the entire 2 week holiday ... so much rest she caught up on and de-stressed after exams and school (although I must add she loves being back at school again).

She looked terrible when her tonsils were removed (everyone at the hospital commented and gave advice wrt her skin and was shocked to realize this was the effect of topical cortisone addiction).

Anyway, one of the nurses told me that when she had her tonsils removed, her eczema vanished (perhaps related, who knows ... but what I do know is she went through a terrible flare and then as soon as her tonsils were removed and we started her on the course of antibiotics the flare lifted and her skin started to clear ... so much so that she's back at school again for the second term).

Much to be grateful for ... and even if another flare hits (which is possible) ... I know that it will disappear again and her skin actually heals now after every flare ... I am so grateful for these breaks in between and little (and big victories).

Eden's skin prior to the tonsillectomy & anti-biotic treatment ... NASTY 10 1/2 month flare 

Eden currently after the tonsillectomy & meds ... doing so much better. Feeling happier and more relaxed ... so grateful it's gone for now.