Back to school

Eden is finally well enough to return to school:

Her skin is looking better than ever (still have spots and parts that need to heal but she has the most beautiful milky white and a lot of parts are soft skin at the moment).

She's sleeping better

Shedding less skin

Still slightly itchy

No open sores and infections

and just generally very happy.

We met with the principal and Eden was excited (and scared) at the idea of returning to school.

When she finally returned to school (Yesterday the 15th) she burst out in tears in front of her class mates but her teacher kindly comforted and reassured her that all will be okay and since then she's been all smiles and happy spirit.

She told me today "Mommy, I like looking at my face in the mirror" ... and she even pretended to be a swimsuit model as she was wearing her swimming costume ... it was amazing to see.

We are not pushing her too much (i.e. athletics try outs are a no-go at the moment and if any bullying happens the principal wants to know about it). When flare ups hit, she will be allowed to stay home until she's better.

And then Eden's little brother also started grade 1 this year so she's super excited to see him at school as well.

All-in-all ... I feel very positive and excited about this new phase of life ... and extra excited that Eden is so positive.

We have come such a long way ... it's been so incredibly exhausting ... so, I am just incredibly grateful for this turn of events.

Big year ahead

We've been away on a much needed sea holiday ... but it turned out it was exhausting  (still very nice though).

Upon arrival, Eden's skin looked like this: flared up and irritated and slightly infected again.

But as soon as we got to the sea, Eden (who doesn't bath), bravely jumped and splashed into the sea and the amazing healing properties of the salt and the ocean cleared the infection up in a day!!!

Unfortunately we had to endure a lot of sun (December is the hottest time of the year in SA) and hence Eden got a bit too much sun and got slightly sun tanned ... which resulted in a flare, peeling and insane itching  ... so we kept her indoors for the last couple of days (went for beach walks in the late afternoon but that was it).

Here are some pics of the first week of our holiday (Eden enjoyed it, despite her skin and no one stared as everyone else was sunburned and red LOL!!! ... so she looked pretty normal)

Towards the end of our holiday, Eden mostly walked around with her umbrella shielding herself from the sun but at least still finding a way to enjoy herself.

Oh and did I forget to mention that Someone had her very special 10th birthday just before Christmas ... lucky girl ... she doubled up on gifts this year.

She also sat on Santa's lap and asked him if by any chance for Christmas she could have a healthy skin ...  Santa was so kind he asked us if he could please pray for her (which we allowed) and it was just such a magnificent moment to show children that even the Great Santa ... prays to God (who is the true Healer and Giver of gifts).

Then on New Years Eve our family decided to lit a lantern and send it into the sky ringing out the old and in the new ... hoping the new year to bring health, miracles, happiness, peace and normality.

As my husband and I stood on the balcony of our holiday home toasting the old year away with some sparkling red grape juice I just broke down crying ... it felt like 8 months of tears I have just held in, trying to be strong, carrying Eden and myself ... and everyone else that's confused and worried about her condition ... it was tears of a long, exhausting and intense year and just absolute relief of knowing the year has ended.

This might actually be the year when the end of TSW is in sight.

After 2 weeks of holiday, sun and sea we are back home  ... and currently Eden's skin is looking beautiful compared to before the holidays started:

Can still see the elephant skin on her elbows:

face is looking beautiful and clear

neck is more clear

Despite the spots, her arms look a lot better and less red 

tummy is perfect and soft

back is similar to her arms witht he spots and thick pinkish skin

legs have been the slowest part to heal but even here it looks a lot better

also elephant skin, pink skin and spots but the infection and flare up is gone for the moment. As always so incredibly grateful for the light at the end of the tunnel.

To all our fellow TSW sufferers:

May this year be the year of complete (or almost complete) healing, happiness, health, peace and prosperity for all who suffer from TSW...may your one day (in the near future) reflect back upon this time and see the growth that have occurred, recognize the blessings that you received and cherish health and the precious gift of your bodies... that you can all become a strength and a pillar to others who are suffering ... may this trial never break you ... and if it does (because it might) ... may it do that only to build a better you again.

All our love
xxx

Thank you's

It's been a HECTIC year ... but finally have come to the end of our school year:

After all the hell Eden's been through ... I am extremely proud and happy to share this achievement with everyone: Eden's school held their annual honours evening last night and Eden was awarded a certificate and academic scroll for her hard work this year ... I expected an academic achievement the first half of the year but gave up on that idea once the 3rd term started as Eden really struggled ... A LOT (with her health and skin) she dropped about 2 to 3 % in her average (academically) but it was still extremely good.

Then we got the invite to the honours evening and still I didn't expect a scroll ... only a certificate.

Turns out she got a scroll anyway (will post a pic of it soon as Eden lost it on her way off the stage due to nerves lol).

Again, I just want to thank Anonymous for posting that bold comment a couple of months ago ... to pull her out of school and start home schooling her .... second to stopping cortisone use ... this has been the best choice I have made in terms of what benefits Eden. (she will return to formal schooling as soon as she's better but until then we'll continue home schooling her) ... ALSO, Thank you to Eden's school Monument Primary: Mr Moore and all the Gr 4 teachers for allowing us to use their curriculum to get Eden through the year ... THANK YOU THANK YOU THANK YOU to Eden's Bff Kyra and her mom and my friend Natalie for faithfully bringing Eden's homework every week ... for all the messages and hugs and love and support and just being a friend to Eden when no one else was.

And THANK YOU to my husband Gordon that stood by us this year ... that paid for EVERY SINGLE medical, physical and psychological expense for Eden (and doing it with a happy heart and willingly) ... and all the blessings you gave her ... and all the love and discipline she (and all our kids) gets from you ... and standing by my side ... and carrying me when I couldn't anymore... you are the love of my life!

Eden also got reading glasses Yesterday ... she looks soooooooo cute (I think it's genetic because I got reading glasses when I was 10 years old as well).

And last but certainly not least .... it's FINALLY holidays for the kids!!!! REST REST and more REST for them.

So grateful.

Love and prayers of healing for all

xxx

Before we stopped cortisone

As I mentioned in the forum; I have forgotten what Eden's skin looked like BEFORE we stopped cortisone use.

Here's a pic to remind me:
At this point she was on dermovate, persevate, elecon and at times betenoid syrup. It worked for a few days, then I would stop the treatment and give a week and her skin would go out of control... the cortisone NEVER helped for long ... she always needed something stronger or use it longer but even then it would just be a matter of time before her skin went crazy again.

Last year December Eden came home after a holiday to the coast, with her dad & his family. She came back looking RADIANT, her dad made one slight adjustment from Elecon ointment to Elecon liquid and and I thought wow!! Finally something that helps Eden ... but again ... the holidays was hardly over and Eden's skin started flaring again.

I got fed up ... fed up ... fed up and obviously CORTISONE WAS NOT THE ANSWER

This is what she eventually looked like ... and this is when I finally decided to STOP USING CORTISONE:

Now at 7,5 months off Cortisone and having gone through hell during these past months ... and even though she's not yet healed (prob 50 to 60 % healed) .. and people still stare ... and I still want to scratch their eyes out ... I am nonetheless extremely grateful to be able to post this pic and show the world just how Eden's skin is healing ALL BY ITSELF ... WITHOUT cortisone.

Having said that: I have been in hospital with my baby and decided to use the opportunity to chat to one of the paediatricians there about Eden's condition ... and he told me that what she was experiencing was in fact CORTISONE WITHDRAWAL and that it was going to take a long time BUT that she would eventually be 100 % healed ... he told me Elecon is too strong for children and that alone would have caused problems.

So, I'm not as stupid as some people think I am ... LOL!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

7 months Cortisone Freeeeeeeeee

We have just entered our 7th month of TSW.

When we just started tsw Eden's skin was bad and then calmed down for a week ...  at that time (2 to 3 weeks into her withdrawal) I didn't know much about TSW so I thought "wow, her skin is doing a lot better without cortisone" then BAM!! The redness started ... and spread like wild fire ... with that came the BURN that lasted for weeks ... and slowly started to fade only to be replaced with intense itching and elephant skin ... oozing and CRAZY flaking ... she struggled to regulate her body temperature for months and then it went away ... but the flaking and itching continued (still does) and it drives her CRAZY at times.
We also experience INSOMNIA ... the absolute worst in my opinion (as a caretaker) but she's doing a lot better ... she does however still wake up at night but usually manages to go back to sleep after a drink of water.

Now 7 months into withdrawal we have started to experience more body aches (she mentions it feels like growing pains) and I guess this is where the nerves starts waking up again as many of the fellow tsw members speak about.

BUTTTTT we have also reached that frustrating STAGNANT stage ... where nothing much happens ... where the skin stays the same for weeks to months before the next phase of healing starts.

Having said that ... I am incredibly grateful for the progress we have made ... how far we have come and how much better Eden is doing (she does still have moments ...at least once a day where she cries from frustration and impatience ... but most of the day she is happy and able to function).

Her exams are starting this Thursday .... so it's study study study and that = STRESS and THAT = FLARES.

The last time she had a flare was a month ago and I am happy to say that the flare she is experiencing currently is a lot less intense ...her face was clear but have red patches again .... and she burns a bit when I wash her ... and she sheds a bit more skin then a week ago.

But this too shall pass ... and that is comforting ... after 7 months I can say with confidence "this too shall pass!!!"

Thankfully her exams will only continue until NEXT Friday and then she is done for the year!!! She will be on holiday for about 2 months !!!!! YAAAAAAYYYYYY.

Now on a slightly different note ... I hope Ahfaye don't mind but I really really have to post just how brave I think you are!!! You are going through TSW on a level that most of us can't (and are grateful that we don't have to) comprehend ... you must be an amazingly super strong woman to endure TSW on the level you are and I just want you to know that you are a strength and inspiration to both Eden and myself. You are a warrior in every sense of the word....and my hero!!

I am so angry at people who are too egotistical and prideful to do themselves the favour and research TSW ... they are too quick to say "it's not legit"or "you are stupid to believe that"... I am so frustrated at idiots who think they are so blooming educated that NO one or NOTHING can teach them anything about the medical industry just because cortisone addiction haven't been recognized yet .... to them all I can say is ... STUFF THE HELL OUT OF OUR LIVES you egotistical pig! How can people make judgements and give opinions if they don't even take the time to RESEARCH TSW!!! Look at Ahfaya's blog you ignorant person ... go listen to the various (hundreds to thousands of stories of suffering and recovery ... look at the pictures of the babies, toddlers, young children, teenagers, adults and elderly .... and THEN after you have walked a mile in their shoes ... THEN and only THEN are you qualified to give your "medical opinion" ... just because you have a "degree in medical physiology and chemistry"does not make you an expert ... but you won't, will you? Because you are too egotistical and selfish to even bother.

Where did that come from?
A family member of Eden that absolutely refuse to believe that she is experiencing TSW ... because this person is so "educated" but he doesn't even bother to pick up the phone ... and ask Eden how she is doing.

So sick and tired of prideful arrogant pigs.

Ahfaye's blog is:
http://byebyesteroids.blogspot.co.nz

Ahfaye, We are sending Much Much love and strength and good wishes (and everything that is beautiful) your way.
xxx

PHOTO UPDATE:

Sooo  tired and exams are only starting this week. Can also see the rash in her face.

hands look very old for a 9 year old ... but it won't be forever

top lip flare: very common with tsw members

 not much of a change in her arms

 legs are the slowest healing part of her body ... absolute stagnant at this stage ... but thankfully better than a month ago

 Eden's falling out of all her clothes ... every week getting skinnier and skinnier.

LOL .... so appropriate ... as I have never experienced so many panic attacks and anxiety as I have during the past 7 months.

Strength to endure

http://www.lds.org/media-library/video/2013-10-4060-president-thomas-s-monson?category=general-conference/2013-october

Our family was listening to President Monson's talk that he gave earlier in October.

I really wanted to share this video as I find so much inspiration and strength as I realize time and again that we are not the only people experiencing suffering and agony.

President Monson lost his wife in May this year and here is this man encouraging and strengthening millions of people reminding them to stay strong and endure to the end.

I was especially touched by the story he shared of one of his old friends (this old man was 105 years old) ... he couldn't hear anymore and ... he couldn't see anymore ... he knew he was about to die and yet on his death bed all he could say was "thank you, Heavenly Father has been so good to me"

We showed this video to our children with the hope of reminding them that we are not the only ones with trials and pain and suffering ... that other people are going through a lot worse and that trials are there to strengthen us and bring us closer to the Lord ... even if it doesn't feel that way at the time.

I was reminded by President Monson to PRAY EVERY DAY ... that we really need the Lord EVERY HOUR ... and that if we hold on to the Gospel and The Savior & stay close to the Lord ... no matter how tough things get ... we will be given power and strength to endure those trials.

UPDATE WRT EDEN'S SKIN TODAY:

Her legs are looking good ... compared to a month ago... I find that her legs are healing the slowest ... she itches a lot and scratches and hence spreads infections which starts the terrible flare cycle all over again ... I have given Eden a spoon and nicknamed it "scratcher"... she's allowed to scratch but only with the spoon as it's easier to keep clean and bacteria won't collect on it as much ... but she doesn't always use it ... it's like she "zones out"when she starts scratching ... and don't care how much she hurt herself or how deep she scratches as long as she can scratch. Urgh!!

Arms looking good ... she still has elephant skin on her elbows, wrists and hands ... but it use to be around her neck as well and now her neck is softer, so I'm not too worried about it.

Tummy looks good and feels soft ... such a magnificent feeling

She flares a little on her back at times but funny enough she never wants to scratch her back ... she always only wants me to tickle it gently ... she says it calms her down.

And then finally ... the highlight of Eden's week was when a little girl called Amy & her mom Lena got into contact with us (they are going through the same ordeal ... Amy is currently in her 4th month of steroid withdrawal and have recently started a blog as well) ... in the picture below is Eden busy replying to Amy's facebook messages.

Such a blessing to have made a new friend .... someone to vent and share and laugh and cry with  ... via technology ... Yay for facebook :)

Amy's blog is:

http://amysitchyjourney.blogspot.com

Swimming

This was such a happy moment for us when Eden decided to climb into the swimming pool (thankfully a salt swimming pool) with her brother ... it was totally spontaneous, so she got in clothes and all .... that night she had her first bath in nearly 2 months (usually I just wipe her down).

Even though she's not better and A LOT of healing still needs to happen (especially on her legs) .... I am thrilled because she is happier and more herself lately .... enjoying life again (although not fully yet ... but enjoying the days / weeks when she's free from a flare).