Wednesday, 27 November 2013

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

Friday, 22 November 2013

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!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Tuesday, 5 November 2013

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 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:

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


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.