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Monday, 17 August 2015

19 months/17 months update and a rant

(19 months off topicals, 17 off all steroids)

So, probably because I'm struggling much more at the minute than I have been, I've decided to post another update.

I went on holiday to Japan, it was amazing! I did have some skin troubles though :(
But I thought I would post some pictures of my skin, along with some pics of my holiday because why not!

So before I left I was just coming out of a flare and while I was there my skin was GREAT. really smooth. However the heat made me very sticky and I think that's the reason I'm back in another flare now :( I'm trying to remain positive.

Here are some pictures!

I somehow manage to not look like im trying to tear my skin from my limbs. Fancy that!

Anyway here are some skin pics, flaring now.

^this is the general texture of my skin. its horrible. bumpy, oozy, sticky. ugh :(

I'm feeling very emotional, not wanting to leave the house, feeling desperate. I just struggle to see the end sometimes. I know it will come (or at least I hope). It's just so hard to carry  on with no guidance. I think that is the hardest part for me. I just want to be able to go to the Dr, explain my situation and trust that they will do the right thing for me. But I can't do that. The Dr doesn't have my best interests at heart and that is hurtful and makes me feel hopeless.

Dr Rap has been posting on the facebook group a lot and has created a blog which is infinitely reassuring. I just wish there was a Dr Rap in every country, infinite Dr Raps!!

Nowadays I think the only use in going to most Doctors is if you have researched your condition, you know what drugs you need and you just have to go to the Dr to get the script filled. I'm sure most people can relate to that. How stupid is that?

I recently saw someone post this sign they had seen at their doctors..

Maybe I'm feeling particularly emotional lately but I can't put into words how angry that makes me. I cant tell if its a 'joke' or not but even so...we as patients are now going to be punished for taking our health into our own hands? There is a reason so many of us 'self diagnose' and that is because our doctors are not doing it for us! Despite the fact that that is their job. Despite the fact that they should listen to our needs and not just mindlessly write us a script. We are not all the same. We are all different, we have different needs and we should be treated as patients, not customers.

I know I shouldnt get so angry but when I constantly walk around in a skin that feels 2 sizes too small for me, shedding skin everywhere, having anxiety attacks when I get even the slightest bit sweaty, it is very difficult not to blame the people who did this to me and to so many others.

Hmph :(

Anyway that's all for now. Hopefully I will see some relief soon :( x


  1. *hugs* totally agree with everything you said in this entry. the thing about TSW is that it's a long journey and it really drains our motivation and belief sometimes. BUT don't lose hope! it's really nice for dr rap to keep encouraging us and holding our hands :) couldn't have done it without him strengthening my hope and faith last time!

    stay strong you!


    1. Thanks so much for your reply <3 I am pushing forward and hoping i see some changes soon!


  2. I know how you feel. I'm 14 months in it's hell. All this because I trusted a Dr. Basically the pharma companies new in the 70s about this reaction when they strengthened cortisone creams. It's taken my life energy spirit
    Deep depression you start to become a different person and no one is being held accountable.