Friday, 23 August 2013

Insomnia

Eden is sleeping TEERRRRIBBLY the last while.
Anxiety and itchiness ... crazy itchiness.

According to the other TSW patients this intense itchiness (where you want to get to the bone) is a good sign ... it means that the skin is healing and nerves are waking (or something like that)
but ... the lack of sleep is not a good sign ....
Especially for me ... as I have a baby, a six year old, a 9 year old TSW child ... to look after ... plus cook, clean, teach, nurture ... bla bla bla.
Sleep is so essential ... it is what keeps me together at the moment.

I was up 3times with Eden last night where she woke and simply couldn't go back to sleep again ... so I had to lie down with her until she fell asleep again (usually an hour later).

This is blooming hard!!

We are taking her to our GP today and hopefully will get something to help her relax and sleep at night ...

I'm looking at Eden's skin this morning (ran her a nice warm bath with Apple cider vinegar and epsom salt ... she really enjoyed it ... got the apple cider vinegar tip from the itsan forum :) .... and while I was helping her dry down and get some ointment on herself ... her skin looked like it is actually starting to heal in certain spots (if outsiders had to look at her skin they would get a fright and feel so sorry for her but to us ... who deal with her daily ... this is such a wonderful thing to see).

1 MONTH TSW


2 MONTHS TSW

CURRENTLY AT 4 MONTHS TSW


FACE AND NECK AREA AT 1 MONTH TSW


FACE AND NECK AREA AT 2MONTHS TSW


FACE AND NECK AREA CURRENTLY AT 4 MONTHS TSW


ARMS AT 1  MONTH TSW


ARMS AT 2 MONTHS TSW 


ARMS CURRENTLY AT 4 MONTHS TSW




Tuesday, 20 August 2013

Turns out that ....

It wasn't bed wetting but Eden's skin oozing ... it oozes so much that it seeps right through the mattress ... soaking it ...

The past couple of nights we have made Eden an extra bed in her room so that if her bed gets too wet and sandy (from the dead skin) that she can just wake up and get into a fresh clean bed and carry on sleeping.




TSW update


This is an every day occurance ... 
EVERY morning I sweep up this amount of skin.


Flare around her neck area.


One of the typical symptoms of TSW (apart from the red burning skin) is that they ooze ... A LOT!!
Every day I wash Eden's bed sheets, put clean sheets on her bed and wash her pajamas because it is moist from the ooze and feels like sand paper from the skin flakes.

She's also started wetting her bed ... which I assume is from anxiety and fears of the TSW experience ... she doesn't even wake up after wetting herself .... because she is so use to feeling dampness on her pajamas ... 

The joys of TSW.



Saturday, 17 August 2013

@ Anonymous

At first I felt slightly offended when I read your 5 word comment "stop sending her to school"... I thought "what do you know about our situation ... it's not that easy"...  but then I realized ... that is exactly what needs to happen.

So thank you for the comment ... I've been contemplating bringing Eden home for months now ... but I've finally made up my mind this weekend after Eden's hit yet another flare ... and I can't bare seeing her suffer like this emotionally and physically .... so time to bring her home.

Will see the school principal this week and make arrangements to home school Eden for the rest of the year and probably all of next year.

Time to comfort this girl ... she's in a lot of pain.

I dabbed her down with warm water this evening and immediately dried her off and put epizone ointment on ... gave her meds, hot water bottles and put her in bed.

Now she's relaxing and getting ready to sleep for the night.

Good night all.





Thursday, 15 August 2013

Calmer skin ... seriously??

Calmer skin ... Really? That's it?!!!

Yes this is what Eden looks like when she doesn't have a terrible flare up ... and yet a good day ... is no walk in the park for her.

I've kept her home for today ... and might also tomorrow ... she's itchy and not sleeping well (insomnia) ...





Eden's legs ... looking good considering how it use to look 2 months ago ... it's slightly shiny because she applies ointment on

This picture looks a bit weird ... Eden bend forward so I could take a picture of her lower back area.


Wednesday, 14 August 2013

Gratitude ... memories ... and withdrawals.

I decided (seeing that Eden's skin is calmer for the time being) that now is the time to express my gratitude ... it's so easy to get caught up in the negative, difficult, painful emotion of this exhausting journey ... (just saying that sounds exhausting) that I sometimes forget to count my blessings ... and express gratitude.

So this is me ... wanting to shout out to the world how grateful I am despite getting down in the dumps at times.

I am married to the most wonderful man ... I couldn't even have created him in my dreams ... and somehow our paths crossed ... and we got married... it's almost our 2 year anniversary .... it feels like we've been married ... forever with all the trials we've had ... but the beautiful thing is that our love deepens DAILY ... every day I'm with him .... I genuinely love him more than the day before...he is truly the only man for me ... my soul mate xxx




Then we had our beautiful baby that was born at the end of December last year (now a fatty almost 8 months old) ... despite sleepless nights (which miraculously) we don't have much off and teething aches and pains (which is also under control) .... he is just a happy happy happy baby...probably because he's naked most of the time ;) 


My little 6 year old Caden ... is truly a blessing and light in my life  (and everyone that meets him) ... he is the most obedient, kind, loving, gentle soul ... he is sooooooooo naive it's hilarious !! and YES ... in the picture below this one he got hold of markers ... and well .. what do boys do when they get hold of markers?? They draw spiderman webs on themselves of course.



Then their are my two step daughters ... what a long way we have come ... and yet from the beginning I have never been treated with disrespect ... they have handled the adjustments of a blended family with so much grace! So much growth, acceptance and kindness that I have felt from them ... coming from a divorced family is not easy ... and both had to deal with it ... and struggled at times ... but the way they have accepted the adjustments ... how they LOVE the three younger siblings ... and the determination they have to make life work for them ... is inspiring....they are beautiful inside and out.


Then there's my beautiful little girl.

My only flesh and blood daughter ... stubborn and difficult as can be .... but learning to submit and humble herself ... and obey ... she's gone through so much in life ... in such a short time it's sad ... and yet ... I believe this will be for her good ... and that there's a reason behind it all.

Eden is my first born ... and I have beautiful, precious memories with her ... seeing this blog is dedicated to her and her struggle to deal with cortisone I have added more pictures of her ... a glosarry of her life and the various stages and ages:

Eden as a tiny ... fat 2 month old getting blessed. My mom holding her...very proud moment for her.


As Eden started to crawl and handle different textures it already started to affect her hands and she would refuse to let her hands touch grass or sand ... so I put gloves on her hands ... seems to do the job at this stage.
Having some fun painting ... she wouldn't use her hands but a paint brush as the paint irritated her skin ... at this point she was already using prescribed cortisone mixed with a water based cream.

This was Eden's 4th birthday ... the rash already spreading more and more ... (see the bumps on her arms) ... I think it was right after this when the Doctor's started giving her a stronger oral and topical cortisone (Betanoid syrup, Elecon, Advantan etc) ... she was still very tiny here ... but in the next pics she started ballooning from the water retention of cortisone.

Christmas (she was 5 and her face a lot rounder ... at this point she was on cortisone for 6 months non stop ... and we thought it was working well ... not knowing what we were in for).


About 6 years old ... still a little chubby bunny



She was on cortisone in all of these picutres ... but it never lasted for long ... she would always have a flare up as soon as we stop the cortisone use ... give or take 2 days.



This was what Eden's legs constantly looked like for the past 3 years ... always with infections ... no cortisone would work for long .... and as soon as I stop using it ... she would flare up.




Finally this year April 2013 we decided to stop COLD TURKEY the cortisone use .... and it's been difficult.

This is what she looks like so far:

Weight is gone ... she is soooo skinny now compared to what she was ... her skin is still red, bumpy, itchy, burny and flaky .... but we are almost 4months into withdrawal ... and I know we are on the right path .... and so finally that is what I am grateful for .... The Itsan website and forum .... without everyone's stories that is so willingly and generously shared with the world on the net .... we would still be lost.



Sunday, 11 August 2013

Cheesecake!!

Eden stayed over at her ouma (granny) on Saturday as I had to work in the morning ... when I fetched her that afternoon she was COVERED in a red rash .... in her face ... and especially around her mouth ... and I knew without any doubt that she ate something she wasn't supposed to ....
The culprit was .... Cheesecake!


Suffice it to say ... I was not impressed ... as this was not the first time I've asked the two to be careful what they give Eden ... and for the time being to avoid certain foods .... especially the next three weeks as my sister is getting married and Eden is going to be a mini bridesmaid / flower girl and I know how embarrassed and self conscious she gets when her face is flared up ...

Yes I do realize flares are inevitable during Cortisone withdrawal ... but I definitely find a connection to her eczema (above her top lip) and the food she eats...and that wisdom with what she eats does help alleviate some of the discomfort.
So we need to be wiser with regards to that.

Having said that .... I also realize that the Cortisone have to work out of her body first and foremost before we can even begin to connect the dots as to what she is actually truly allergic to because at the moment this girl is allergic to everything .... or sensitive to everything.

Her tummy has a constant redness about it (also her arms, legs, neck and some parts of her back) .... but during a flare it gets a lot redder ... hotter ... burns a lot more .... thankfully .... at the moment her skin is ... a bit calmer... she oozed (water running out of her skin) during the past week ... especially Saturday ... her clothes were soaked ... in all of this we have to just remember how amazing our bodies are ... and it's capacity to heal itself ... and that all of these symptoms (no matter how unpleasant) is actually a very very good thing.... and it will pass.




Thursday, 8 August 2013

Calmer

Her flare started and lasted for 2 weeks ... she was home for a week but it seems as though the flare have subsided for the time being and her skin looks and feel calmer ....

On the photo you can see a pic of Eden with her brother ... his skin is snow white compared to hers ... there's a permanent redness over her body and with flare ups it gets a lot redder and even hot to the touch ... at the moment she is looking well enough to go to school ... and she's happy ... which is more important for me.

We know another flare will hit ... that is as sure as clockwork but we also know it will pass and she will be able to function again for a little while.

During the next week, Eden is going to be incredibly busy with school tests, school projects and eisteddfod ... I'm shocked at how busy little 9year olds are in schools these days & amazed at their capacity to juggle it all.