Monday, 26 December 2016

Two Years of Topical Steroid Withdrawal

Hey all!

Just wanted to do a quick update before the year runs out.

First of all, in my last post I wrote about how worried I was about going on a big trip to Europe with my boyfriend. Shortly after I wrote this we both realised that I definitely was not well enough for such a trip yet and we made the heartbreaking decision to cancel and put it off until I am well enough to enjoy it.

In the end it was the right decision as my skin continued to get worse which would have made travelling totally impossible and both of us would have been miserable if we had gone.

However, good news is about a month ago now I started feeling quite a bit better after a horrible flare lasting around six months! Still not perfect, but I've well enough to leave the house and spend time enjoying life much more with less pain and discomfort than I have in years.

The biggest change I have noticed about my current condition is that I'm able to handle the summer heat really well (as opposed to last year where I could barely leave the house all summer).

I am still dealing with significant oozing and crusting on my eyelids which makes it impossible on some days to go out and do things, but my cheeks, which for the last two years have been horrible, are for once the least of my worries and actually look quite normal!

I'm hoping that the relief I am having from my withdrawal symptoms will last, but there's no telling for how long, so I'm trying my best to enjoy it for now!

To finish off, I'll just let everyone know that I also recently celebrated my two years of Topical Steroid Withdrawal. Instead of feeling sad that my withdrawal has gone on for so long (as I often do), I felt quite excited and badass and proud of everything I have done in order to get my life back. 

Anyway that's all for now! Merry Christmas and you'll be hearing from me in 2017!

Tuesday, 9 August 2016

(Nearly) Twenty Months TSW

Hey all!

It's been several months now since I've given an update about my skin. This was partly because I was doing OK for a while there and I guess I was just enjoying it, and then because I have not been doing so well again and it's hard to share that fact especially since I am so far into my withdrawal.

While I was doing semi-fine around the first few months of the year I was getting out of the house heaps, spending more time with my boyfriend, and even looking for work. I had a very, very temporary job (brief as in one shift ha) working at the election, and for the past few months I have also been tutoring someone once a week in chemistry which has been a lot of fun. I even managed to go on a short holiday with my boyfriend interstate and was able to hang out with my best friend and her boyfriend (she lives so far away and I've been wanting to visit her for years but have never been well enough to so being able to do this was amazing!) 

My skin was not perfect but it was good enough for me to go out everyday without being too self-conscious.

So after these few months of regaining a bit of normality, flaring again has hit me very hard, especially because this flare has been long, unrelenting and completely horrible. 

So basically this is what I'm working with most days ...

I'm experiencing the usual symptoms- crap tonnes of oozing, red burning skin, and the crusting over and shedding of my face on almost a daily basis. The rest of my body however is still doing pretty well, with small, infrequent patches of rash that crop up rarely and last only a few days, along with a minor constant itch and minimal pain. But yeah, no worries there. 

The worst part about it is that when I was feeling better a few months back my partner and I decided I was well enough to finally go on the trip around Europe we had planned to go on before I knew I was going to have to go through withdrawal.

So that's all booked and we are leaving in just over a month and I'm honestly very scared. I decided that cancelling the trip is not an option so I'm just coming to terms with the fact that I'm probably going to be very sick and unsightly throughout the trip. So I'm hoping and praying that my skin decides to clear up even a little bit before we go and at the very least doesn't get any worse.

I'll try to share how it goes when we come back.

Fingers crossed for me! Stay strong everybody!

Wednesday, 10 February 2016

14 Months Topical Steroid Withdrawal

Hey everyone, it's been a while!

Since I've last posted it's been Christmas,  New Years, and I also passed the milestone of my one year TSW (and beyond!).

Things have generally been pretty up and down over the last few months. Most of the time my skin (mainly my face) is bad but manageable, but occasionally I have good days where I look and feel relatively normal. 

I'm at the stage were I'm trying to go out and do things as much as possible, in spite of how my skin looks, and basically just trying to figure out how to live with it, instead of continuing to wait for it to get better. I've even been looking to start working again.

I'm still limited in many ways, but I have been able to enjoy doing many of the things I have missed out on over the past year, such as going out with my partner and family, and we even managed to go away for a mini-holiday for a few days along the east-coast of Tasmania which was amazing.

Anyway, I want to keep this post short and sweet. Hopefully things keep getting better for me and everyone out there who is still struggling along with me. Hope you guys are all coping ok!