So big news this week is that the NEA have made an announcement about TSA! Whoo hooo
It is certainly a big step in the right direction, and hooray for the work of ITSAN! Hopefully there will be more research and more and more people saved from this debilitating condition.
It does imply we are in this ts mess as we ‘used it wrong’ I mean there is only certain number of ways you can apply a cream. Whether you use it with ‘ breaks’ with moisturiser or without, under wet wraps or whether you measured it on your finger tip first, or used it standing on your head with a feather in your arse, the fact is you are using it and there is the potential for addiction. There seems to be this gap between what the drug companies know and what is taught to doctors and passed on to patients.
The risks of topical steroids are far greater than simply ‘ thinning your skin’. If the box had ‘warning can cause addiction’ on the box and a picture of my horrible hands or face and a pile of skin, pretty sure no one would use it, or they would use it for 2 weeks only and no more and run for the hills.
So I am 3 weeks off ts this week. Skin is no worse than when I was still dabbing on ts, in fact its probably less oozy.
People have said face looks a bit better and I just look sun burnt. Still swelling around eyes and lots of shedding from face every morning. The amount of skin I got in my dyson was horrible. The amount of daily skin shedding in TSW is massive, something you do not get with ‘ eczema’ My body is trying to remove all the nasty steroid damaged ‘skin’ This may be why I can’t stop eating and yet still lose weight as it needs the calories to make skin and repair itself.
I get one ‘good day’ a week at the moment but its random as to what day it will be. Red sleeve reduces to pink and skin is more dry than oozy and I’m not cold. So I try to use this day for something (like going to see my horse, going for a walk or the supermarket etc)
I still sometimes feel very hot but not as ‘burn-y’ as when I first started tapering. Losing more hair again too, not noticeable yet. It just sits on top of my head in a bun as I don’t want to have to bother with it. Hair has probably got the most grey hairs its every had as colouring my hair along with shaving legs are not a priority anymore and probably not a good idea anyway. Eyebrows are thinning now so I think I’ll be sporting that baby seal look for summer that a lot of TSW people get.
Lymph nodes are huge. Interestingly, the places that itch most apart from red sleeves are the areas of skin around lymph nodes. This probably also fits with my blood results my white cell counts have increased a lot from pre TSW. All due to the amount of inflammation in the skin, thankfully other results and liver are all okay. Derm has increased dose of methotrexate to 15mg once a week although it may be a few months before I see any effect.
I took some full body pics this week in a bikini to try and show where the rashes go. Who knows? After TSW I may be able to wear a bikini with a tan rather than red sleeves and rashes!
My friend Jayne’s wedding was this week and sadly I wasn’t up to going. Jayne and Chris had an amazing day so congratulations guys! You both looked amazing and so happy in the photos. I did feel a bit more emotional as it emphasised all the lovely things in life you miss out on because of shitty TSW.
Ian is in Vegas on his ‘stag’ do this week even though the wedding probably won’t be happening for a few years once TSW is done. He really deserves a lads holiday with his friends and Im pleased they all went.
Positives …. Ears less oozy this week. Derm said my face looks a bit better ! Had one good day.