Checking In

It's been a while since my last post so thought it would be time for an update.

I'm doing really well lately. I've been on methotrexate for 5 months now, 4 months at 10mg and 1 month at 15mg. I've managed to sucessfully wean down from 300mg of cyclo, I'm currently on 150mg. I've been dropping 25mg per 2 weeks. So I took 300 daily for 2 weeks, 275 daily for 2 weeks, 250 daily for 2 weeks, etc etc :)
The first week that I do this my skin gets angry and I get these HUGE pimples that look like bug bites...

 But by the second week this subsides and I'm ready to drop down again. I really can't wait until I'm off the cyclo for good. Going to be a good feeling :)

The weather has been getting warmer here in Korea and I've been making the most of it by swimming in the sea and catching some sun, my skin loves both :) I'll be moving to hot, humid and sticky Vietnam in August, so I hope my healing can continue in a new environment!

Here are some pictures of me exploring Jangdeung beach, about a 30 minute drive from my apartment. My skin loves the sea!

Anyway that's all for my check in :)

Hope everyone is doing well xx

Methotrexate week 3 and Thailand pictures

I have been taking Methotrexate for just over 3 weeks now and wanted to write a little about my experience so far!

I also just got back from a great trip to Bangkok in Thailand so thought I could share my pics here too :)

First off..methotrexate! So when I last posted I wrote about my ridiculously complicated drug schedule, it's getting easier to remember as time goes on but its still unbelievably complicated and I can't wait until I can transition to taking my immunos once a week once the MTX kicks in!
I took my first dose of methotrexate on Friday 5th Feb, two 2.5mg pills in the AM and two 2.5mg in the PM to make a total of 10mg a week. The morning dose went fine, and I took 150mg of cyclo in the afternoon as directed. When I took my 8pm dose of 5mg MTX thats when things started to get a bit...weird.
Firstly I started to feel SUPER dizzy and just...spaced out.. is the only way I can really describe it. I've taken psychedelics before and this genuinely felt like a toned down version of this. I felt SUPER weird and sick. The spaceyness subsided by Saturday morning and I was left with just feeling super super sick. I also had a horrible chemically taste in my mouth. By Sunday afternoon it had all subsided.
The next week was much better, I didnt get any of the crazy spaciness, nor the sickness, just a little bit of the chemical taste. By week 3, I had no weird symptoms at all, so I'm happy with that. I think the weirdness was just my body adjusting to a new drug in its system.
I'm really hoping things continue to go well so that I can wean myself off the cyclo and onto the MTX fully.

Anyway here are some pics of me enjoying the crazy Bangkok heat! It was hot and sweaty and sticky and my skin fought with me a little but ultimately didn't give me too much trouble.

S x

2 years!

Today marks 2 years since I quit topical steroids. 10 March will be 2 years off all steroids as I didn't finish my round of orals until 10th March 2014, or something like that.

I can't BELIEVE it's been 2 years since I started this crazy journey. So much has happened in that time - I moved continent, started a new profession, entered into a relationship, lost a loved one...yet still my skin is stagnant, haha, it hardly seems believable!

Anyway things are okay. Not much to update, still on cyclosporine and skin still acts out if I try to reduce. I have plans to reduce after my holidays finish at the end of Feb so I'll be sure to update then.

Even though it's been an impossibly difficult journey that has felt like I've been fumbling around in the dark for 2 whole years, I don't regret a thing. TSW has changed me as a person, it has opened my mind and taught me to never take things for granted. It is without a doubt the best thing I have ever done but I am SO ready for it to be over! Argh!

Until next time skin friends x

PS - I just noticed that for some reason half of my pics on this blog no longer work! Grrr. Hopefully I can update soon

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 year

(and a bit! - i meant to post this over a week ago, oops!)

So January 10 2015 marked 1 YEAR OFF TOPICAL STEROID CREAMS!
I know..I can't believe it either. I know it gets said a lot but when I started this journey, I read blog posts like this one SO enviously, I just couldnt imagine getting here, but I'm so glad I did and I don't regret any of it.
There isn't really much to report photo wise, my skin has been near-perfect for months, I actually just started to get a little flare on my worst bits (my torso and neck) but it's been nothing like what it used to. I am still on ciclosporin though so I guess we can see how it goes once I aren't anymore.
It's also worth noting that I've only been off ALL steroids for 10 months (I was on a 2 month course of pred after 1 week of TSW) so maybe that's why I haven't had my dreaded anniversary flare yet.
I've been SO terrible at updating this blog, but to be honest you can just take that as a testiment of how well I have been doing, it's nice to not obsess over facebook groups and blogs, life is normal and pretty great :)

So for those of you still fighting the good fight, I hope you're pushing on - can I call myself a vet yet?! Haha. And those of you just starting out...PLEASE don't be discouraged by this post, by the length of time it takes because it does get easier, and time just flies!

Lots of love, and thank you to every single person that's been there for me in the past year, it's been difficult but so so worth it :)
S x

ITSAN Forum Anniversary!

Very soon, the ITSAN forum will be 1 year old, that's almost a year of the most helpful and life changing advice available on the internet for skin sufferers.

Here's a link to a beautifully written blog post by inspirational TSW veteran Louise (CLICK) who has put it much better than I could!

If you're new to TSW or haven't had chance to look at the ITSAN website or forum just yet please take the time to do so today! It really is a wealth of information and it has changed mine and many others' lives for the better.

Skin update coming soon,

S x

Warrior

I've been really getting into yoga lately. My skin is okay, it stings a lot when I sweat but I feel like the exercise is good for me. Yoga's particularly good because it's not too strenuous, the Sun Salutations mean my heart gets racing but it's not too excessive to make me feel like I'm gonna pass out!

It also helps that I've joined a lovely yoga school called White Wolf Yoga which is based in a great venue just on the outskirts of the city that has a rooftop terrace. Yoga on the roof with a cityscape sunset setting, I can't argue with that!

Anyway, I don't know how many of you are familiar with yoga but I'm sure you'll have heard of the Warrior Pose:

It's a great pose and I always spare a thought for all the TSW warriors whenever I take it. I know I've talked about this before but I really can't put across enough how amazing everyone in the community is, we're such a strong, supportive group and I'm proud of us all!

If anyone fancies releasing their inner warrior here's how:

 Keep on keeping on warriors x

Rock, Taper, Scissors

So the day is finally here..I'm starting to taper off ciclosporine!
It's really scary but really exciting. The derm was a bit reluctant as I still have some signs of stubborn eczema and my bloods are great with no sign of any crazy side effects or anything. But I want to start making the change while I can. I'd much rather start to taper slowly while I'm in a good position to do so than have to stop abruptly for whatever reason. I've been on ciclo for 6 months now and on my maximum dose for 4 of those months which is enough.
I've reduced from 300mg daily to 250mg daily - not a huge jump but just the fact I am starting to taper makes me happy :)
Hopefully I won't see too many crazy flares and I can continue tapering. I want to be totally off ciclo within the year if possible.

In other news my package from the Home Apothecary arrived today (see my second-to-previous post for more info) and I couldn't be more excited! The parcel itself just smelled amazing and I can't wait to have a long salt bath and cover myself in yummy smelling all-natural balm!

I guess today is one of the good days.
S x

From pharmacy to dustbin

Only one destination for this bad boy and that is the bin, total toxic rubbish!

Had a derm appointment and told him I'm happy with my progress on ciclo and he says he is happy too but why don't I try some of this too?! Couldn't be bothered to argue so here it is in my bag of Meds!

So glad to have people who know what they're talking about who I've met on this journey because I know not to use this nasty stuff

Good news is I have 2 more months at least on ciclo :) which means hopefully my skin won't be out of control for my holiday in Ibiza in 4 weeks!

Hope you're all well x