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).

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!! 

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.

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.

LEGS

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

ABOUT 3 MONTHS INTO WITHDRAWAL.