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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


sore, sore and more sore

weird knee going on

weird knees going on 'elephant skin'

face sore and tender but definitely an improvement

Saturday, 15 March 2014

Hoping for some relief soon Week 4-6

Well this last week has seen me back at the hospital for an appointment with the dermatologist again.  By the time I got there I was in such a state of an 'itchwavecraze' that when I got to the right floor, all I could yelp was, "Have You Got Icepacks!!"
I looked a right sight, covered from head to toe, red as all red and with oedema worsening from my knees down and oozing fluid. They got me a wet wrap and threw it over me.  Then for the next hour I had 2 dermatologists trying to convince that this called for immediate admission. (So hard to resist as all I wan't is instant relief)!! This would mean a couple of weeks or so of cortisone wraps and immuno suppressants.  Of course, the fact that I expressed that I was pretty certain the cortisone overload is what this was a direct result of and I was not prepared to be treated by that means, left them looking at me like I had 4 heads.
What was bizarre, was how critical they were saying it all was but that they were unable to do anything if I rejected the cortisone treatment they would provide if admitted. In other words they have no other possible treatments than cortisone or immunosuppressants because these are the most cost effective for the hospital, (as one of them blatantly told me).   Pretty pathetic, when they are only creating a whole new generation of people who will be getting sicker and sicker with these treatments. There seems to be no acknowledgement that the treatment in itself has become the problem for many people. I was hard pressed to even get information as to how to manage this at home if they couldn't treat me there.
Meanwhile, I have remained on my elimination diet provided by my naturopath, so at least, hopefully ,I am not doing any extra to add to this ghastly mess.  Working towards good gut and all that. 
Bit of a backward step with that though, as have been back to see my GP who got me to do swab test on oozy ankles to reveal +++staph infection, so given this is not a good time for a rife infection, I am now on antibiotics.  GRRRRrrrrrr... Hang in there ol' gut of mine, we'll get there. At least my GP is willing to keep a check on me, as she seems to agree with the ultimate problem of TSW.
Due to my pain levels, lack of sleep and absolute discomfort on all levels, my GP has prescribed me a health care plan which has enabled me to access 10 sessions of hypnotherapy, from a psychologist who is also very interested in nutritional health.
I've had 2 sessions so far which were great in terms of relaxation but so far I haven't been able to quite translate that to when I need it in desperate times - like when I want to rip my self apart, am in severe pain or can't sleep due to both of these, which is most of the time. He is also working in these sessions to help me try and support and improve my immune system which is shot to pieces.  I hold out hope that this process may make a difference over time. I didn't think I'd be a good candidate for hypnosis but he seems to think I can go quite deeply with it, so fingers crossed.
Condy's Crystals has helped some of the oozing settle where the oedema was quite bad. 
The oedema is sort of settling as I have now been on diuretics from gp for a few days, but legs and feet still pretty sore and quite purple. I still have the redness everywhere though the swelling has settled in my face somewhat, it is just a bit (lot!) gruesome that I now have overall broken, swollen, weepy skin and on top off that it is now just falling off everywhere at the same time, is all over me, my clothes and everything else is covered in skin flakes. 
My current wish list is: personal nurse, housekeeper and chef :)
Week 4-6
Week 4-6
Week 4-6
Week 4-6 Miss Piggy
Week 4-6

Saturday, 1 March 2014

Week 3 and 4: How to keep sane is the magic question

So the tremendous fire has spread from head to toe.  Each day it has just pushed further and further with the excessive inflammation. From head to neck,  then to shoulders travelling down both arms (known as red sleeves, indicative of Red Skin Syndrome), then torso and by the end of week, followed down my legs to the start of my toes. The bumpy hives is throughout and the itching comes in waves that rarely break. The only relief, though I don't know if it's the best, is to jump in the bath.  Then apply greasy goop to insulate what was skin but is now either broken and weeping or so taut that to move would be to crack apart at every seam. The sensation is raw pain, as all nerve endings feel as if they are just completely exposed.  I have also developed oedema in my knees and ankles over this few weeks which doesn't add to an already unsightly picture. And the wonky body temperature means I have started with momentary uncontrollable shivers.

Since my last posts I have been to see the allergist at the hospital which I'd been on waiting list for some time.  Not much happened as they could do no patch testing as there were clearly no skin patches free.  Some blood tests were taken which revealed the obvious for me, with showing up positive to things like dustmites, pollens, grasses, molds etc. I've been referred for a dietician app. as a follow up... meanwhile got into see the dermo at hospital who to my horror was going to be the same private dermo I'd been seeing for 18 mths with only progressively worse problems.  Thank god there was one other available, not that it made a lot of difference. As there stance is much of a muchness - yes, you have a history of atopic eczema and associated allergies, this calls for cortisone.  I explained that I was pretty sure the treatment had created a completely different problem and that the cortisone was the culprit here, not the eczema.  He basically  said well, all I can suggest is another immunosuppressant drug, as it is not economically feasible  for the hospital to treat this any other way than with one of these 2 drugs. 

I asked him if he had ever heard of Red Skin Syndrome or Topical Steroid Addiction and Withdrawal. He off-handedly said, oh yeah, I think I read an article in a text book when I was studying, then proceded to hand me some printout info for the immunosuppressant drug to go away and think about for my next app. Not likely to bother given I have just stopped taking Azathioprine(another immunosuppressant, that didn't do much except make me feel permanently more cruddy that usual.  Anyways, the naturopath I've started seeing is keen on supporting gut function and supporting me in strengthening my body, and my gp is also supportive in trying to get me as healthy as possible and keeping a check on what's happening.  She said she'd never seen anything like it, but was willing to look up the ITSAN site and have a squiz which was comforting, because the hospital just looked at me like I had four heads when I said I did not want cortisone. 

Sleep has still not been on the agenda due to the never ending itching and nerve pain.  So far I have been plodding through my days with things that seem to take forever to do -  baths, greasing up, washing umpteen changes of greasy clothes and bedclothes in a day, keeping appointments and preparing meals,etc.  But yesterday, after having no sleep for weeks, I finally fell asleep at 4am and woke at 1pm, which you would think would be grand, except when I woke up it was like my body had turned into a statue and any slight movement was excruciating.  My bedclothes had dried onto to all of my weepy skin and I was in a world of pain.  I lay there for an hour trying to muster the gumption to get myself up.  It was hopeless though and I gave in and rang a wonderful friend who came and helped me out of bed, helped me undress to be able to have a bath and then helped me re dress, dished us up dinner and got a load of washing out for me.  I was so lucky she could come. What a mess.  Thank goodness today is a little better.
I am dearly hoping that there is some reprieve between flares and this one will be over soon.!!??
Well wishes to all you others out there and thank god there are some of you who can say you made to the other side and you have your life back again.  You are my beacon of light. xx