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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 , 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  . 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..


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.


Tuesday, 21 October 2014

MONTH 9 Flaring the last couple of months but a bit of a reprieve in the last week especially for face.

Generally speaking I really just keep chugging along, continuing with the flaring cycles of redness, itching, oozing (sometimes), drying and flaking.  (but please check out last pic at end of blog for some clear looking skin !!!)
I have continued with my anti inflammation management from previous months but additionally have started seeing a homeopath in the last few weeks.   She has been trialling me on a few different remedies. 
My face and neck and hands in particular were driving me mental!!
About 3 weeks ago I started applying Robertson's Skin Relief Ointment to my face and eventually neck as well and if you do make it to the bottom of my pics you'll notice a big improvement by comparison to what it's been like for ages.
I'm not sure if the improvement is because I finally made it to the other side of a flare without having another flare set in on top (which generally seems to be what has happened to date), or as a result of ointment in conjunction with homeopathy.
Hard to tell, but what I do know is that the ointment provided great relief to the dry, cracking face I have had going on for quite some time. It gave the skin some flexibility back and eventually I have been able to use it on my neck too.  It's no miracle cure and I don't know how long it will last but it is a huge relief to be able to move my face and neck more freely.  My neck is still quite sore and fragile but definitely an improvement for now. 
I used the ointment on face earlier on but not with same results.  I think maybe because I am a bit further along now my skin may be responding differently.  It still took a while to be able to use on my neck without getting more itchy though.  It's pretty sticky (like glue), smelly and messy and not the easiest to apply but is better than not being able to smile, create general facial expressions, open mouth, or move neck, etc. 
Can't seem to use this ointment on the rest of me though yet without it making me more itchy.
Am so pleased to have a normalish looking face for a while and it is a major relief to NOT be itching it like I still am on most other parts of me.  My face is finally getting a holiday from this mess!!  Fingers crossed it lasts for a good bit. xx


Saturday, 6 September 2014


Beginning Month 8

Pros and Cons on how things are going.
Hello to everyone out there, hope your skin isn't too sore at the moment and if it is I hope that you get some time out for a bit of relief soon, we all do surely deserve it!!
This a painfully slow process but I can't believe that it's been 7 months gone already, even if each month sometimes can feel like a year.  It definitely feels like I'm in some kind of a time warp !!
  • some nights getting 3 or 4 hours sleep straight without waking up itching myself silly
  • a bit more energy
  • feeling a bit more accepting of the ups and downs of the flaring cycles
  • improved concentration levels which means I can read a book again
  • the weather is warming up which means I don't have to wear so many layers of clothes and bedclothes
  • slight improvement of paranoia - in regard to leaving home for periods of time without the fear of having an out of control itch fest while out, (easier to manage at home with  things like baths and icepacks.
  • not so many weepy patches
  • have stuck with food plan for 7mths now - no dairy,  no eggs, no grains, no sugar, no nightshade veg and limited fruit - can see a bit more easily when things I do eat exacerbate skin aggravation and omit for a time and rechallenge later.
  • continuing supplements which have been determined by gp and naturopath based on blood and gut tests : vit d, fish oil, iron, zinc, digestive enzymes, and pomegranate herbal tincture to treat gut parasite (which I hope will knock it on head otherwise will need to take antibiotics for it)
  • not itching so much during the day
  • my daughter and grandson have been sleeping over 3 days a week for a couple of months while my daughter has been doing her nursing placement to complete her nursing studies. 
  • I've been babysitting my grandson and doing drop off and pick ups for childcare, etc, which was doable but exhausting.
  • Need to highlight that there's no way I could have done this earlier on though, so definitely an improvement in the mobility stakes!! 
  • my hair has stopped falling out and started regrowing wispy baby hair
  • still flaring up and down every day
  • still itching everyday though not all the time (night still crumby)
  • nerve pain (zingers) have returned to the skin on upper legs, chest, wrists and hands
  • massive ongoing shedding of skin!!!!
  • can't keep up with cleaning up massive shedding of skin all over the house, car and me
  • still needing to use sleeping meds
  • expenses for : appointments, supplements, icepacks, cotton only clothes/bedclothes, bath salts, apple cider vinegar and specialised food requirements is crazy (but makes a difference) and necessary in order to feel like I can aid in some level of comfort, even if limited only for now
  • still can't wear a bra
  • still have limited energy
  • still not working
  • still look ghastly
  • skin still feels sore all over
  • still all through my scalp
  • quickly going grey
That's me for now, here's some pics to give you the general idea
Warm Wishes
Caroline xx 
on the one hand, skin so taut it is hard to move it and on the other hand below, lost its gumption and elasticity

face and neck continues to flare up and down and still sore, sore, sore, this was about a week ago

back of leg, skin losing its gumption everywhere

a couple of weeks ago

leg, flaring, sore and nerve pain again

skin on hands is pretty knackered and are still experiencing puffiness

this is how my face is at the moment and continues to flare constantly with a cycle of reddening, itchiness, weeping, drying and flaking and then, joy oh joy, it starts all over again