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Sunday, 30 March 2014

The skin I'm in... Week 6-8

Well, the inflammation has subsided somewhat on my face for the moment.  So given it is not as sore and raw (and I don't look like I've just walked out of a boxing ring anymore), I have tried out 'Robertson's Skin Repair Ointment' which is an eczema product and is made in South Australia .  It's a cod liver oil base so not the sweetest smelling and it is quite a firm consistency, so a little difficult to apply.  I have to be very gentle so that the skin isn't pressed too much because it is still so fragile and breaks easily.
It doesn't sting which is a plus.  So far so good but my face is still weepy on and off and it isn't quite 'real' skin on my face yet, or anywhere else for that matter.
The itching is still coming in waves and almost impossible not to itch unless I hurl myself in the bath. This is very annoying when out (as there are no baths). Hence don't go out, unless for appointments.
Hopefully as time passes the intensity of this itch will settle some.   In the meantime, am still seeing naturopath, GP and hypnotherapist for health support and to find ways to manage pain, sleep deprivation and insane itching and help improve immune system.

I think I will start looking into bandages and bandaging to see if I can protect some parts of me that just keep getting torn up. 

Not much to report on for week 6-8, except that the eczema which travelled into my ear canals became infected but seems to have rectified itself by oozing out and are they are not so sore now.   

People in the last few days have said  'oh you are looking a lot better' (when they see my face), which I appreciate, I do, but the truth is the rest of every square inch of me is skinless and so painful.  And the vain side of me thinks 'oh really'! because I may look better in terms of the lessening of facial inflammation, but I have skin all through my hair that is shedding from my scalp and ears, and bits all over my face which are either coming off my face or falling from my head and sticking to the ointment on my face. Gross to the enth degree. Must remember to be thankful for small mercies though.

On the up side, I have lost several kilos over the last few weeks, though I wouldn't recommend this as a weight loss regimen, at least there is at least one plus so far.




poor ol' fingers, not much skin left on them

my palms were the one thing I had going for me but looks like they may be cracking up soon

still got the 'red sleeve' going on and the arm of an 80 yr old

oedema has settled somewhat with the aid of diuretics but because the skin was so incredibly stretched it has peeled off in about a 100 layers at once, still have my sole/soul thank goodness

not completely oedema free but much better than it was

icky!

sore, sore and more sore

weird knee going on

weird knees going on 'elephant skin'

face sore and tender but definitely an improvement
 


8 comments:

  1. The swelling certainly has gone down around your face which is great. My son's face is still very sore, but then we used steroid creams primarily on his face. Can I ask where you applied your creams mostly when you were using them? I hoping for a speedy recovery for you, TSW is such nasty business and that is an understatement - anyone that goes through this is a warrior in my eyes.

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  2. Thanks for your comment.
    Unfortunately I have used it everywhere. When a babe I had eczema quite badly and ended up in hospital and as a child my mum would plaster my arms and legs with creams and then bandage me up and then wrap it all in glad wrap, I also got it on hands and feet as a kid. Ahh... the good ol' days. Sometimes, as I got older - adolescence and onwards I would get eczema on my face but it's only been in more recent years that I have gotten eczema on my torso and face and anywhere else more regularly and with a hivey burny sensation. In the past I have tried many other ways to manage my eczema and have tried to be sparing with cortisone use as a last resort but in the past 18 mths in particular I went to a private dermatologist and decided I would follow orders because it was so unbearable. Anyway, clearly didn't do myself any favours and it's no wonder my skin has had enough and has decided to rebel no matter what.
    I hope your son's skin settles soon and I think he should have a much speedier recovery in that he hasn't been exposed to it for too much too long.

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  3. Thanks Caroline, we've been using it on an off for 10 years. In fact he went through withdrawal when he was a baby, we just didn't know what it was! Recently though we have only been using it on his face for about 18 months (before that it we used it sporadicallyl). Which is probably why its very sore. The rest of his body isn't too bad, thankfully. He has a little on his back, legs and arms/hands. But mostly he suffered on his face, very swollen, swollen eyelids, the same as you were. I keep putting off posting photos, hoping that his face shows improvement, but recovery is not linear, however much I wish it was. Good luck with your recovery, Louise (Josh's mum) xx

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  4. Hi Caroline, Steve McKee sent me your link as I also have RSS and am using Robertsons too. just thought I'd jot down a few things I have learnt, as just about to start month 9 of TSW. Firstly re Robertsons, I am finding it one of the only things that has helped my skin (I only started using it in month seven), although I am still going through my weekly cycle of flares, which at first made me think Robertsons wasn't making much difference, I then ran out of the ointment and the next flare was way worse than whilst on Robertsons, I am back on it now and have noticed the difference in my current flare. So I am going to persevere with it. As you know, TSW will only heal with time, no magic cream will cure it, but there are things that can ease the discomfort. I have also found that when my skin on my face is itching so much I could scream, if I put neat Manuka honey (15np strength) all over it, it stings for a couple of minutes and then the itching stops, it has been amazing, I look a sight when I go out but hey, after this long you really stop being bothered. I have also just started putting a big handful of those dead sea salts (cant remember the name but they are in all the health food shops) in my bath and although I don't have RSS on my body (just face) it has made my skin a lot softer and smoother and seems to calm the eczema on my tummy, legs etc. My final bit of advice, which you may not be up for at the moment, is running, I have found that if I go for a run, my face feels a lot better afterwards, the itching and hives go and my lymph glands in my neck go down, I am now going for a run almost every day and feel so so much better for it, even if its the last thing I feel like doing at the time. Sorry this is a long one, but I remember being at your stage and being desperate for any tips. Oh and btw, I may be 9 months down but please take comfort in that the bit you are going through is the worst, it does get better, you may not realise it, and that is why it is important to take photos to look back on, but every day really is a step forward to being completely healed, don't ever forget that, you will get your life back and you will be stronger and happier for it. Sending lots of good wishes from the UK, Lucy xx

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  5. Hi Lucy,

    Thanks so much for your comment and the thumbs up on the Robertson's ointment, I just bought a new jar the other day. I have found it helped a lot with my face as well. Just wish the jar was bigger to be able to cover the rest of me as I would need a lot for overall coverage. Well done on getting to month 9 and I am glad to hear that it hopefully continues to improve for me too from here on in. I'll keep in mind what you say about the running, you're right, not quite up for that sort of the thing at the minute but I imagine it helps things clear out more quickly i.e. what you mentioned about the lymph glands settling.

    My feet are quite cracked on the edges at the moment and have been applying Robertson's to them too, maybe once they aren't so sore I can get some shoes on and get started. Early days, but something to look forward to.

    Lovely to hear from you,

    Caroline x

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  6. Hi Caroline. I'm thinking of trying the robertsons cream. I know you wrote this a while back. Could you give me an update on if you felt the cream helped?

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  7. Hi Louise am in mth 18 now and have continued to use it on my face and neck pretty regularly. I don't use it on other areas as it makes me itchier as does most stuff. For my neck and face, it doesn't prevent flares but it definitely helps alleviate them for me when they occur and stops it from going completely nuts. It heals the cracks I get on my eyelids and around mouth and ears very well and provides a flexibility for the skin in this area that makes it more bearable for me when weepy, broken, scaly or super taut. I still use jojoba oil on my face but the ointment seems to provide a good barrier for my skin whenever it feels compromised.
    All in all my face hasn't gotten as bad as in the early days and though there seems to be no definitive magic bullet for stopping flares so far, I definitely think it's been a useful thing for me to help manage when they happen.

    Hope this info helps. I hope the warmer weather has been helping you over there and that things are continuing to improve. xx

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  8. Hi, I've been in touch with Steve at Robertsons and have a couple of jars on the way in the post. I'm hoping that it may just help me over the final hump of TSW. He is a big fan of your blog too! The good news is he told me that they are planning to stock the cream in the UK next year, which will be great news.

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