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 ...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:

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.


  1. Jou blog is pragtig Andriette! En Eden is n regte warrior! Ek was sommer in trane soos ek die hele blog gelees het! Ek kan defnetief n verskil in die fotos sien! Ek kan myself net indink hoe jou hart moet breek vir jou kind! Baie sterkte vorentoe! xxx

  2. Hi Sune' Baie dankie ... dit is iets baie na aan my hart ... en ek voel 'n groot verantwoordelikheid om ander hiervan bewus te maak ... dit is DIE moeilikste ding waardeer ek al ooit moes gaan ... om my siek kind gesond te probeer kry, maar mens kry krag van bo. Liefde A

  3. Oh Eden! You are looking so lovely!!! Yes, I know the skin is still rashy, but the difference is HUGE! Hopefully your exams all went well! Praying for your healing! As for those who do not believe - STUFF IT! As a nurse I tried explaining to my coworkers (nurses and doctors) what I was going through only to get that look like I had ten heads! I got frustrated and just stopped talking altogether! It's worse when it is family! That hurts to the core! My family will ask how I am from time to time but they really do not understand (other than my sister and mom and hubby of course). You keep to what you are doing and stay strong - you and Eden will come out the victors in all this and those who doubted will be stunned! :) Many hugs and prayers!