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Wednesday, 26 November 2014

Month 10 and I've had my face for a month and have been to the hairdresser's for the FIRST time since this all started!!



Hi Everyone,

This is month 10 TSW for me.  It's been a milestone in recovery for the moment, with a face  (being mine) that has held it's own for a month now!  Still  using fishy Robertson's ointment on it which has been it's saving grace I think.  It didn't help earlier on but seems to be at the moment. Yay!!! I was using jojoba oil there for awhile but the ointment is a bit like glue and seems to seal it so that it's not exposed to the elements and nourishes it at the same time.  Bit stinky and sticky, but so worth it to have something that feels like it's helping me.

 

I haven't been able to wash my hair more than 3 times in 9 months due to the state my skin including my scalp was in but finally, a couple of weeks ago, was able to go to the hairdressers (not looking like a complete alien with intergalactic skin)  and get my hair washed and cut!!!

 

I've been able to catch up with my sisters from here and interstate for a biannual reunion which I would not have imagined possible even 6 or so weeks ago.  I still spent nights in the bath to alleviate itching but I was so happy to see everyone.  I love my sisters!!!   We also caught up at the end of our weekend with our brothers, inlaws, nephews, nieces, cousins and grandchildren.  Oh, to feel human, what a treat.

 

I still continue to be mini flaring everywhere minus face everyday up and down like a yo-yo.  The itching is always worse in the latter part of the day and I still have very cruddy sleep due to  the itch factor which is mental- making in terms of messing with sleep.  I bandage my hands and arms at night to try and protect them from itching and the pressure of the bandage seems to help (sometimes) but I still end up getting up 2 or more times,  jumping in the bath.  I use Epsom salt and apple cider vinegar in it and it really does reduce the itch and calms the body for me.  Then rewrap and start again with the trying to sleep.  Sudocrem (which is a zinc cream) is my biggest friend.

 

I've been trying out some new balms from the wonderful Stephanie of www.thehomeapothecary.etsy.com , they are a Lemongrass balm, a Teatree oil balm, a Calendula balm and also a Zinc one. Stephanie developed a business making a whole range of amazing balms due to her baby son Isaiah going through a very, very traumatic experience of TSW, however he is recovering amazingly now.  You can read their family's story here www.isaiahquinn.blogspot.com  . A particularly valuable story for any parents of young children going through this nasty business of TSW or  who have any doubts about topical steroids.

 

I'll try to do a more comprehensive update blog on things I use for my skin, supplements and diet info next time round.  But as we all know, what helps one does not necessarily help another. Even what helps me now, may not have last month and may not next month. But there are some things that I do think have helped or do help me, so will post this soon and you may find something useful in it.

 

Am happy to report some improvements, have to appreciate them while they are here!!

Take care of yourselves lovingly all you sore skinned folk, hang in there, have patience with your body, it's working very hard to make you better from the inside out..

 Carolinexx



 
Me after my long awaited hairdresser visit!! A couple of weeks ago.
 

 
Face looking pretty damn good if you have a look back at earlier posts.




 
When I caught up with my sisters we went for a visit to the Art Gallery of South Australia, gee it's changed a lot since I was there last.  This isn't the best pic, as taken on dinky phone but I thought this reminded me of what it can feel like throughout TSW at times.  They were pretty amazing sculptures and really quite beautiful and emotive.
 
 

 
Inner elbow pretty knackered
 
 
 
 
Upper knee and scaly skin, plus wart virus that I have contracted throughout TSW, yeah great!!
 
 

 
Neck, looking very aged and saggy, have itched it everyday for 9 months so am not surprised

 
Still have the red sleeve going on and once again skin so knackered on my hands which continue flaring daily


 



 
Still have flaking and sensitivity around my hairline and scalp but thank goodness the itching has stopped here for the time being.

 

2 comments:

  1. You skin looks so much better! You still look like you have a fair bit of RSS/erythroderma going on though. I hope it settles fast for you. I love the prickly sculpture! It is so perfect for TSW, not just how we can feel physically but mentally too. Speedy healing lovely lady <3

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  2. Hi Ella, Thanks. Yes definitely improvements and also a way to go as well. The sculpture's amazing isn't it! It sure did resonate with how my body can feel at times and you're right, mentally as well. It was also incredibly beautiful in the 'flesh' so to speak. Thanks so much for your well wishes, really appreciate it. How are you going? Hope you are making good progress.

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