Is it worth it?

So, checking in after a long, long break! Things are really so great right now that I forget all about TSW for long stretches of time - something I never thought would happen. I have successfully reduced down to 7.5mg of MTX  a week (down from 20mg a week) and my skin has never been better. There are parts of me I thought would never heal that are silky smooth and total non-issues now. It is magical and, to me, so worth the wait. I am by no means healed, I won't feel comfortable using that label for a long time, and certainly not before I'm finished with immunos. But I feel happy with my progress & hopeful as my 4 year anniversary approaches in Jan 2018!

Recently, a close friend asked me if using steroids was my biggest regret in life. I didn't even have to think about it. I don't regret using steroids. For starters, the decision was not really made by me, doctors have been prescribing the creams since I was 3 months old. But in a general sense, I don't regret my steroid use and subsequent TSW. TSW has taught me a lot of things about my body, about modern medicine and about patience, and those are lessons I will carry with me. I've also met some fantastic people along the way who have supported me, people who are so generous and kind. I feel lucky to have met them! As if that wasn't enough, my skin has never been better and I can finally feel that there is an end in sight. So no, I have no regrets. And YES! It is absolutely worth it :)

As previously mentioned I am a bit rubbish at checking my comments here, so if you want to get in touch just drop me an email at sarahecg@gmail.com

S x

Fed up

Writing this from my desk because I'm miserable and distracted at work. So I already mentioned that I'm flaring but instead of improving with daily DSS and ACV baths it just seems to be getting worse :( it's nowhere near as bad as it was before I went into hospital but I'm just so angry and frustrated that my skin should still be this bad when I'm still on prednisalone and ciclosporin :( 

Even my face/cheeks are rashy and swollen which is something new. No amount of antihistamines will make the swelling go down so I look like I've been in a fight currently. I'm just feeling down and fed up because I haven't even started my journey properly this time around yet and I'm already sick and tired of feeling uncomfortable in my own skin 

Moan moan moan

Flaring

Little update about where I'm at right now

So I finished my second course of antibiotics and, as I predicted, I'm flaring again, but nowhere near as bad as in week 1 of withdrawal as I'm still on 20mg of pred a day (still reducing by 5mg every 5 days)
A few people have told me that flaring is normal while reducing pred and also that antibiotics contain anti inflammatory properties so it's normal to flare when coming off those too, which is all good to hear, I was really worried about my flare happening while I'm still on oral steroids, made me scared of what it will be like when I stop completely. And also the fact that I'm on ciclo, i thought this would prevent flares from happening, but then I suppose it is nowhere near how it could be so I'm grateful for that.

As for myself I'm still doing pretty well, nowhere near emotionally/physically drained as I was when I first quit everything, so the meds must be helping. If my skin stays this way throughout the whole of my withdrawal I'll be pretty happy (i know this is unlikely!), it's far from perfect but it's totally bearable.

I bought some dead sea bath salts last week as well as some apple cider vinegar which lots fellow tswers have been raving about and when I took a bath when I first flared I noticed I was a LOT less red and itchy afterwards, just more dry which again, I can cope with.

So overall I'd say I'm about a 7/10 today, which is a definite improvement from the -1 i felt when I first withdrew.

I'd be interested to know people's stories regarding antibiotics/oral steroids/immunosuppresants and their flare patterns, maybe I can work out how long I can expect to flare, although I know everybody is different.

Hope everyone is doing well and staying positive, I know I say it all the time but I'm really grateful for all the love and support everyone provides me and other sufferers with!

All the love in the world
S x