I’m back!

I left! I got distracted by Birthdays and jobs and sleeping and all those things that get in the way of the VITAL job of telling a small group of people online about my skin condition.

I was 27 this week, I mean I was 26, now I am 27 – I feel like I’ve crossed some kind of bracket into another checkbox whenever I fill in a form. ’27-30′ oh dear.

Anyway, skin. Things have been okay ish, I’ve been avoiding gluten since I’ve decided that’s what makes me worse – I always kind of avoid most things being vegan, so I expect my liver is like some kind of palace – but yes, gluten-free, although my skin took a weird turn this week and I had to scrabble around to find some gluten to blame, it could have been in the malt vinegar crisps I ate but didn’t check:\, or excitingly, it could be in the Aveeno I apply all over me every day! 

so yes, that happened, it hasn’t been terrible but I have caved in a couple of times and turned the shower up SUPER hot, I know it hurts afterwards and it sucks all the moisture out of me, but for those 7 minutes of scalding my whole body at once it feels incredible! Please don’t do it! But my god. I need to work on stopping that habit – its particularly easy to do on my legs – since they dont twist and articulate as much as my arms/torso I can get away with abusing them much more. Sorry legs.

ALSO, this week I finally got to see a dermatologist, she took a bloody test, was totally cool and helpful and sympathetic, and in the end recommended I buy industrial size Aveeno with a special voucher for cheapness – and I use steroids once a week, for a bit. To clear me up. I got booked in for a patch test too but that’s not until Sept. Sigh.

I really don’t want to go ahead with the steroids so I think I’m going to bail out on them and keep on with this long-term unproven TSW thing, and hope that come Sept the skin test says i’m allergic to a thing, and if i stop eating the thing, I will improve. I just need to know, you know? No progress picture this time because I am nursing an unusually awful graze I scratched into me in my sleep, doesn’t feel like progress! but apart from that month 3 has been the easiest so far!

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2 comments
  1. dwfp said:

    I have to say your ‘long term unproven TSW thing’ made me laugh…I read all the blogs and relate to what they are saying but I just cannot commit to the pain and anguish for 18 months – 3 years for the ‘possibility’ of being better…and these 2000+ people healed, where are they??? Anyway I wish you the best of luck and I really hope you find that ‘thing’ you’re allergic too 😉 also you’re blog is very funny!!

  2. kelly said:

    Hi Dwfp, dont often post much but my boy is one of those who is better, but not one of Dr R’s cured. It is still in its infancy, will not work for everyone, but in our case we went for hospitalised full body stuff to ‘normal’ eczema like patches behind the knees and on the wrists. That I can deal with, the full body stuff much harder! I also know a few whom are totally better, one of which I think was a patient of Dr R. They are about but I think when you lose so much of your life to this crap you become reluctant to hang about discussing it!

    Boy, I am glad you are doing ok, maybe you are allergic to something but from my experience with allergy testing it has been a bit flawed. For example I know my son gets worse when he has too much dairy, I can see it. Yet on his tests he was free and clear for it. From what I gather from other mums the best way to determine potential allergens is the exclusion and challenge diet, a real PITA to do, but can give you better results. I think from what my consultant said it has something to do with differing neural pathways, but I zoned out after a while! Good luck x

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