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Sunday, 5 July 2015

Another belated update - Mth 14 and 15 for me of TSW for Mar/April 2015

Sorry I'm always so behind with my updates but here's Mar/April and will get onto May/June/July soon.

 March 2015

Skin in March was pretty reasonable generally speaking. Mini flares up and down, contending mostly with stretched, thick or gnarly elephant skin. Was still extremely itchy.  Looks better but creases and folds hurt to move, got to say pretty pleased with progress though.



April 2015
Flaring throughout April, redder in certain areas. Rashy and itchy as all get out.
After the previous month or so of finally getting some sleep back.. it's out the window again with the itch intensity.  Infected finger/cuticle.  Face hanging in there, although tight, pink and niggly.





Monday, 8 June 2015

Some catchup posts Month 12 & 13 of Topical Steroid Withdrawal from Jan&Feb 2015

Sorry it's taken me so long to update!

I haven't been able to muster the energy, nor concentration to update regularly over the last few months, so my apologies. Things were up and down skin wise.  Energy slightly improved but I don't think the body and brain ever get used to the sleep deprivation which continued. I did see some improvements though, namely hair growing back!! Still crazy itchy over Jan/Feb (mths 12&13 tsw). The summer heat drove me nuts and exacerbated the itch. Sun still wasn't much good for me unfortunately.  Hoping to reap some benefit from it soon when my skin can cope. Pressure bandaged in the nights and used multiple icepacks to try and alleviate itch but more than not, had to take them off and jump in the bath,  the only thing that helped to settle temporarily.  Face still doing fairly.  Rest of the skin looked improved and was stronger but still felt sore to move, felt structurally impaired.  Energy gone from -5 out of 10 to a 3 out of 10!! All in all probably the best so far at this point. 
Will update Mar/April and May over the coming week so I can get this back up to current date. Hoping everyone's hanging in there.  Know you are not alone!!! This sure is a tough trot but we'll all get there and it will be totally worth it 'cause we're tough cookies. Even if some days it can seem more than slightly questionable!! WE WILL get there, I can't believe I've made it over year line and into the next.  It's all of you Skin Warriors who continue give me the courage to persevere one day at a time !!!
Lots of Love, Caroline

Month 12 Jan 2015

Month 13 Feb 2015

Monday, 9 March 2015

Products I've found helpful throughout TSW


Bit of an update on things I am using.  It's taken ages but here it is!

I know it can be incredibly difficult to find things that help or feel comfortable on the skin throughout TSW.  Here are a few things that have provided some relief for me after trial and error with countless products throughout this process, now month 14 for me!!  Keep in mind that nothing helped much at all for me in the early stages of TSW. All I could use then was a Vaseline type product called Dermeze.   I don't like petroleum based stuff but absolutely everything else burned like acid. Dermeze didn't sting/burn, was neutral and provided a barrier for my skin which was pretty raw and super sensitive, even to air!! Eventually, it no longer provided any use to me at all, just held heat in and made me itchier. So said goodbye, none too soon, to Dermeze, to greasy clothes, bedding, hair.... 
I've found the products below to be helpful so I'd like to share them with you.  However, if you decide to give any of these a go, please make sure you only ever trial one thing at a time and make sure you always do a patch test first or use cautiously to determine if it suits your skin and body first.
Things I use directly on my skin 
Face and Neck: Robertson's Ointment has been a godsend for my face and neck when it was a mess. Provides a good barrier when skin is broken and has been exceptionally helpful to me in healing/maintaining strength in facial skin.  Also very good for dry scaly or cracked bits, if  I apply as soon as they emerge it seems to settle/improve it quickly.  I still itch my neck pretty much everyday and the ointment helps with maintaining flexibility of the skin in this area.  Otherwise it gets taut and dry, I can't move it and it becomes more itchy and breaks when I don't use it.  So I am sticking with it, as is beneficial to me for sure. It's a codliver oil base, with beeswax, colloidal oatmeat, iodine and a minute amount of lavender oil to mask fishy smell.

For anywhere: Sudocrem works as a barrier cream, helps dry out oozy areas, helps seal cracks, helps heal, helps alleviate itching.

I use Jojaba Oil for my face now that it has settled, it is very light and non greasy and apparently is an oil that most closely resembles the natural sebum of our skin.  I use it on my arms and hands and other areas sometimes too. 
Some people use coconut, olive, castor or other oils on their skin, for me these have unfortunately just caused further irritation but may be fine for you.


Things I use in the bath

Epsom Salts - magnesium sulphate : I've spent many hours in the bath over the last year.  It is often the only place I feel any relief from itching.  In the early months I practically lived in the bath as my skin burned, itched, oozed and was so incredibly painful.  Now I still bath with Epsom salt every night and in the early hours of the morning which is when the itching for me becomes unbearable and sleep is impossible.  Sometimes the bath is the only place I get a nap!  It helps soothe and settle the skin (and body), also helps the process of healing raw areas. I use about 2-3 cups small.
Magnesium Sulphate: this is the same as above except in bulk. I ordered and purchased it through a local health food store.  I finally got my act together and bought 25kg.  So much more economical this way when you are using it regularly and frequently!!

Apple Cider Vinegar: I put this in the bath along with Epsom Salts to quell the itch.  It also has antibacterial properties.  Sometimes (when hivey, super itchy) I soak a facewasher with water in the bath and pour the vinegar onto it and wrap around my neck while in the bath.  It helps with the itch and it can help with oozing as well.  It can sting but  that doesn't last and it can be better than  the blooming itch anyway.
It's important to get  an apple cider vinegar that is organic and with the 'mother' in it.
Some people put it in a spray bottle with water and spray it onto the skin and some use it medicinally but the tablespoon full.
When my scalp was bad I used it a rinse for my scalp and conditioner for my hair.  Can sting a bit if you have broken bits though it does help heal.  May need to dilute.
Google it.  So many great uses for vinegar!!

Bi-Carb Soda: I put a small cup's worth in the bath, along with Epsom and vinegar when I am super, super itchy.
Sometimes when I have hives, I mix up a paste with water/bi-carb and apply directly to the area and rinse off after it settles.
I also used it as a paste to wash my scalp with when it was very bad. Then rinsed with vinegar.  Can sting a bit if scalp is raw.

Tea Tree Oil :  If I'm concerned about any infection I put a couple of drops in my bath.  Or dilute with carrier oil and use directly on trouble spot.
Essential Oils : these are the various essential oils I use on occasion, very sparingly!!
Essential oils are very strong, so be careful if you use any at all.
Generally need to be used in a carrier oil.
If I use in bath, a couple of drops only.

Things I eat/consume
Oils and Spice:  Some people use coconut or olive oil on their skin.  They still irritate my skin used topically but seem to be okay to consume for me along with avocado oil and fish oil.  Pretty important to get good Omega 3 oils into our bodies to help heal it, essential for promoting skin health.
I have also started making Golden Paste with turmeric which is very beneficial for reducing inflammation amongst other things.  Very good health properties. You can put it in meals, smoothies, juices, make Golden Milk with it, or just eat it straight.
Other foods I eat are organic: (fruit 1 daily only, veg but no nightshade family, some meat/fish). Some seeds/nuts, good oils.   No processed foods, no sugar, no gluten, minimal to no grains, no dairy except in one decaf a day,

Supplements:  Here's some of the stuff I've been taking to help my gut and skin. 
I've been seeing a great naturopath and gp who've helped me determine what my body was deficient in via blood and stool tests.  So these supplements are specific to my needs right now, yours may be similar or different based on your own bodies needs. 
The magnesium was suggested by a friend to help encourage sleep. 
Helps a little, sometimes.  Is very useful for some though.
I've recently purchased Betonite Clay which I have added to things i am taking internally and also trialling for bath use.


There might be something helpful here for you with a bit of luck.

My next job is to hurry up an update how things have been going since November but I promised I would do this product update first, so here it is.

If you have any questions am very happy to answer them, just send me a message and I'll get back to you asap.

I hope that you're not faring or flaring too badly right now and that you keep in mind (as I have to) that everyday is a step closer to happier healthy skin and body.  

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.