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
xxx

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 ...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.


Wednesday, 30 October 2013

Strength to endure


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:



Wednesday, 23 October 2013

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).





Friday, 18 October 2013

6,5 Months into withdrawal ... FINALLY less skin shedding!!!!

Up until last week I have always had to sweep up this amount of dead skin from Eden's bedroom floor ... this continued for almost 6 months.


This is how much I swept up this morning .... a quarter of the usual amount!! 


Wednesday, 16 October 2013

Celebrating small victories!!

Every morning I vacuum Eden's bedroom floor and wash it so that dust mites won't collect (laminated floor so I can clearly see the amount of skin that is on the floor ... and it's a TON) ... this has been going on for MONTHS (probably 4 months) and just gotten more and more and more and more and mooooorrrreee.

Until this morning ... when I noticed that the "TON" of skin have now reduced to about half that amount!!

When I asked Eden if it's just my imagination or whether she's also noticed it ... she was very blaze'about it saying "I've noticed it for a while now but thought it was just a TSW thing and probably nothing to think about"

I am ECSTATIC!!!!

We've gone from Red Burning HELL FIRE skin to skin that is not so red anymore and doesn't burn all the time 
We've also gone from having trouble regulating body temperature to having a normal body temperature (no more chills and constant shivering)
We've gone from flaking/shedding a ton of skin to about half that amount now ... and probably in the near future NO MORE SHEDDING OF SKIN!!!

It's so easy to get caught up in the negativity of this dreaded painful irritating frustrating heartbreaking agonizing TSW journey that one forgets to notice the small little victories.

Wow :)
Sigh.

Feeling really grateful at the moment.




Tuesday, 15 October 2013

Just being a kid

I just love this picture of Eden and her brother .. playing happily like a normal kid ... her face is looking so beautiful and clear and the moment ... her arms are looking a lot better (far from perfect) but A LOT better ... her tummy, neck and back areas are all healing nicely.

There's definite improvement in her legs ... even though a ton of healing still needs to happen.

The best thing is to see how clear healthy skin is appearing ... and even more so is to see her happy ... positive and even excited about some things no matter how small / insignificant.

Grateful for small victories.


Monday, 14 October 2013

LEGS

 EDEN'S LEGS ARE LOOKING A LOT BETTER COMPARED TO 2 WEEKS AGO.



ABOUT 3 MONTHS INTO WITHDRAWAL.




"If the cup won't pass .... drink it"

Just some comforting words from Elder Holland at the recent General Conference held in Salt Lake Utah.... even though he was specifically talking about MDD / Depression I found this talk extremely comforting and strengthening for those who are going through all sort of trials.


As the caregiver of the person who is suffering from an illness ... the following words were very encouraging and comforting to me:
"If you are the one afflicted or a caregiver to such, try not to be overwhelmed with the size of your task. Don’t assume you can fix everything, but fix what you can. If those are only small victories, be grateful for them and be patient. Dozens of times in the scriptures, the Lord commands someone to “stand still” or “be still”—and wait. Patiently enduring some things is part of our mortal education.
For caregivers, in your devoted effort to assist with another’s health, do not destroy your own. In all these things be wise. Do not run faster than you have strength. Whatever else you may or may not be able to provide, you can offer your prayers and you can give “love unfeigned.”“Charity suffereth long, and is kind; … [it] beareth all things, … hopeth all things, endureth all things. Charity never faileth.”
Also let us remember that through any illness or difficult challenge, there is still much in life to be hopeful about and grateful for. We are infinitely more than our limitations or our afflictions.
My husband have been kind enough to get a housekeeper for us on Tuesdays and Thursdays so that I am free to attend to all our children as well as helping Eden prepare for her upcoming year end exams I Learned a few valuable lessons while chatting to our housekeeper (Pinkie):
This woman have 12 children (most of which are orphans) and 4 of which live with HIV  ... 2 of which are under the age of 4.
She told me that those first two years were the hardest but that things are much better and life seems normal again ... that all the kids are doing well, enjoying school and healthy (even though they have HIV) ... the hardest thing they are currently enduring is discrimination and living with something that (UNLIKE Cortisone Withdrawal) ... they will never (in this life) be free of... and that they (no matter how hard they try) will never (Unlike cortisone withdrawal) have a normal life ... 
YET in all this Pinkie comforted me saying: "never give up hope and faith ... trust God and pray ... your child will get better ... I promise you"

What an amazing woman!!!
PINKIE


UPDATE ON EDEN'SKIN:
About two weeks ago Eden had a terrible infection in her legs that caused her a great deal of pain and all of us many sleepless nights ... but thankfully our Homeopath attended to her and the infection cleared within 24 hours.
At the moment her skin looks the best I have seen so far in the past 6 months but still when others look at her they do a double-take.
Her Bff and her mom popped by yesterday and told me how beautiful Eden was looking and that they can see drastic improvement ... I feel like we are entering the beginning of her healing phase ... Joey mentioned it starts in the mind ... and I have definitely sensed a change in Eden the past 2 weeks ... she's more cheerful, sleeps better at night, (still scratches, oozes and flakes) but generally doing a lot better.
I feel that her healing is finally starting ... even if it's just in the beginning.
Eden's face, neck, stomach and back seems to be clearing more and more every day. 
Her arms looked terrible up until this past week ... it also seems to be turning around for the better.
 Eden's legs are healing the slowest (due to the constant infections she was picking up) but even though it's not looking perfect ... I (and other people) can definitely see changes and skin clearing and areas healing ... her legs will probably heal last but we'll get there.



Wednesday, 2 October 2013

Painful legs

We have just entered our 6th month of cortisone withdrawal and poor Eden is going through yet another flare up and in a lot of  pain ... from skin that is burning and flaking and oozing to skin that tore off as the blankets stuck to her legs during the night to painful bones, swollen glands, insomnia and insane itching!!!

But there's beautiful white skin in between all the inflamed red skin and perhaps this is wishful thinking but maybe ... just maybe it's the start of her new skin coming through.

Let's hope this is the light at the end of the tunnel ... even if it's still in the far far very far distance. 

Picture 1: Torn skin from the blankets that stuck to Eden's skin last night :(


Picture 2: Her legs have a purple colouring to it and there's thick skin but white parts at certain areas coming through

Picture 3: lots of tears as a result of torn skin from her blankets that got stuck to her legs last night :(((

Picture 4: Eden's white skin on her hands coming through

 picture 6: her tummy feels

 Picture 7: neck very tight and sore when I wash it but otherwise it's not too bad.


Picture 8 & 9: arms looks a lot better but it's one of the most painful parts (apart from her legs) on her body

 Picture 10, 11 & 12 painful and irritated and itchy legs but beautiful white skin in between the thick inflamed red areas.



Picture 13: still managing a brave smile 



Tuesday, 17 September 2013

HELL

Eden had insomnia last night ... her skin was on fire ... burning like hell ... NO comfort ... NOTHING that helped ... she cried and jumped up and down and went crazy to no avail. At 3 this morning we were both so tired (having slept absolutely zero hours) ... 

I can honestly say I know what hell on earth feels like ... and so does Eden...we are both so tired of this trial, just hoping and praying and stumbling along trying to get through this.


 

Almost 6 months Cortisone Free

Just an update on Eden's progess (I copied and pasted my forum post below):

Almost at the 6 months mark ... Eden is refusing to bath ... her skin is on fire (AGAIN) for the millionth time the past few months.

She's also developed swollen lymph glands all around her body including the groin area (is this normal??) 
Her breath smells (think tonsillitis is starting again) and our homeopath picked up that she's suffering from Reflux (something she had as a baby).
She complains from extreme back ache and shoulders that ache (not the skin but into the bone).

The skin odour is also there ... it's the strangest smell ... it's not a dirty smell but it's still unpleasant ... it's so weird I can't explain what it smells like (it's very unusual).

She goes through about 1,5litre ointment a week.... constantly applying ointment ... should I see this as an OCD or normal and nothing to worry about?

Her skin is ITCHING ... LIKE CRAAAAAAAZY 

she's still flaking a lot ... I wash her bedding daily ... vacuum and wash floors ... etc etc.

She takes pain killers at night as well as an anti-histamine and then early hours of the morning she wakes up with insomnia but I found an over-the-counter pill called Melatonin (natural hormone) and this helps her sleep again.

What I do find is that even though her skin has red patches, flaky patches, bumps and sores .... there are patches on her skin that seems to be clearing up ... where it seems like normal skin is coming through ... is this the beginning of her healing perhaps?

We were both in tears last night .... it's such an emotionally, physically and spiritually daunting and exhausting time ....

but, the sun still shines brightly every day ... and there's definitely progress .... for example ... she can tolerate the sun now (not for hours and hours but it's a start).... and her appetite is back in FULL FORCE (she use to wear children clothes for ages 11 to 12years) before TSW but now she fits into 7-8years years clothes.... skinny little thing at the moment.

Below are pictures of Eden's legs about 2 months ago ... this was HELL HELL HELL for her 





Currently at almost 6 months: She applies ointment a million times a day hence the shine but sometimes clear fluid runs out of her skin and then it also shines this way (however in this pic it was the ointment).

Also notice the purplish skin colour ... 
In all of this I (we) can DEFINITELY see progress ... it's not an easy road but never for a moment are we looking back.



Thursday, 5 September 2013

Anti-Bullying

One of the less noticeable scars of cortisone withdrawal is the amount of bullying, judging and ridicule these people (especially children and teenagers) have to experience.

One expects teasing from children ... even if it's subtle (a mere look often speaks louder than words) ... and sadly a lot of adults give Eden that "look"...in fact I cannot count how many times I have caught adults openly staring (nearly twisting their heads around to see what is going on with Eden's skin) ... and may I add ... it's not just strangers ... but people who actually personally know Eden ... who understands what she is going through and still can't prevent their mouths from hanging open.

My husband often have to calm me down ... in fact restrain me from ripping heads off (figuratively speaking of course).

That being said ... I understand as a mother of a TSW child ... I am over-sensitive and over-protective and the best thing for me is to explain to them (again ... and again ... and again) exactly what Eden is going through and then hope and pray that the message might sink in.

BUT.

What I eventually go fed up with, was the amount of subtle (and open) teasing that Eden endured from children at school.

And I feel strongly that teaching children values such as tolerance, kindness and just plain manners is NOT the responsibility of the school but first and foremost the responsibility of the PARENT!

Eden is now being home-schooled with the help and support of her school (90 % because she is physically struggling and 10 % because she is emotionally struggling ... that emotional percentage might have been higher if it wasn't for the fact that Eden's been attending anti-bullying kiddie courses with her step dad for the past 2 years).

There's a link to that website just below the pages heading (to the right of this page) for those who are interested in Anti-bullying or personal safety & protection.











Wednesday, 4 September 2013

Local Newspaper article

Our local newspaper interviewed us last week regarding Eden's cortisone free journey.

Below is a pic of the article. and the link to the newspaper website / article link for the fellow itsan group members that would like to read this:


Who knows....Maybe someone else in SA are looking for answers that can only be answered by ITSAN



Tuesday, 3 September 2013

How we discovered TSW

Eden was born with a red patch under her neck, it soon spread to the folds of her arms and behind her legs (Doctors informed me that Eden hat Atopic Dermatitis (Eczema) and that she would most likely outgrow it) fast forward to 4 years later:  the cortisone was not helping anymore and the dermatologist prescribed much stronger cortisone creams (one for the face and one for the body) ... by this time her eczema was spreading and the Dermatologist added oral cortisone to the topical cortisone  ... this worked really well  (for the first year) however Eden was gaining a lot of weight due to the cortisone use ... and then after a year her skin started breaking out into an uncontrollable rash ...

It was so frustrating!!! The cortisone would help for a little while ... but then to give her body a break I would take her off the cortisone for a week or two (by the end of those two weeks she would be completely flared up again and back on cortisone for a week) this was an endless painful cycle for the past 4 years until I finally decided that we can't do this anymore!!

I was not feeling comfortable with the use of cortisone anymore ... it wasn't helping ... her body needed something different .... perhaps the chance to learn to heal itself again.

So we cold turkey'd the cortisone use ... and took her to our Homeopath who informed us that it was going to get a whole lot worse before it would get better.

I didn't realize how much worse it would get .. until almost a month later when Eden's first TSW/TCW (topical steroid withdrawal / topical cortisone withdrawal) flare hit ... she was RED all over ... AND not itchy as before but BURNING ... and NOTHING would help the burn.

I started a blog for Eden in the hope that someone would read this that was going through this too ...just for someone to send Eden an email / message to say she will be okay ... that's when I found the following blog:
http://eczemahealing.blogspot.com/
and realized what Eden was going through (a weight was lifted in the form of an answer ... there was help ... and there was hope for her condition and that she was NOT suffering from ECZEMA alone anymore ... but from TOPICAL CORTISONE ADDICTION.)
I then found the ITSAN website and added us to their support group ... where I found a whole lot of other people that was enduring this difficult journey with us ...
www.itsan.org

It was such a comfort to both Eden and myself to look at the before and after pictures of some of these people and to get emails and little messages from people all over the world encouraging us to stay strong and sharing their stories with us.

Now 4 months into her withdrawal and perhaps a 1/4 of the way into her recovery (can't really say how long it's going to take before she's better) but we are not looking back ... so grateful that our prayers have been answered .... for years and years I've been searching ... tried every remedy ... changed her diet ... but nothing helped and finally the dots all connected:  Get rid of the cortisone ... and hold her hand (figurative and literally) when those dark moments and flare ups hit....and with time the flare ups will get further apart and become less intense until it will completely fade away.

BTW :  HAPPY SPRING EVERYONE !!! :)
(Eden was a flower girl at my sisters wedding this past Saturday ... she felt like a princess (we had to cover her arms ... but just look at her beautiful face!!).