Wednesday, 14 February 2018

Three Years of Topical Steroid Withdrawal

Hello everyone long time no see!

It's been over a year now since I last posted (soooo long I know I'm sorry augh I'm the worst) but I'm ready to give a short and sweet update as to how I've been going.

My skin was still pretty rough in my last post (December of 2016) but so much has happened since then! In January of 2017 I decided I was healthy enough to start working again. I was only looking for a job that would start me out at a few hours a week just to see if I was capable of doing so. I ended up finding a job that had me going flat out for the last 12 months! I work as a food server at a cafe, as well as working in a retail shop and administration within the same company. Doing so has been massively challenging but has allowed me to test my limits and remind myself that I am smart and capable as hell. I work with a lot of people, many of whom don't even know that I have been so sick which has actually been pretty cool. Working so much has also allowed me to be able to move out with my partner once again (we spent the last few years living with his parents while I was recovering). We loved living with them but it  has been awesome to be able to get on with things and look after myself again after so many years of being reliant on those around me.

Most exciting news I have is that I will being going back to University in two weeks to complete my Masters of Teaching so I can be a science and maths teacher one day! 

Now I can imagine one of the questions those who are going through TSW would most want to know is ... have I healed? Honestly, I would have to say no . But don't panic because it doesn't really matter. What is most important to me is that I am healthy enough to be able to get on with my life and do all the things I have been wanting to do.

My skin is not perfect, I get red and itchy, and I am pretty sensitive to a lot of things.  My face still has days where it struggles with heavy flaking and redness- although the dreaded oozing has finally left me which I am so grateful for. My face is often swollen and sore and it makes me not want to leave the house or see anyone- but that is also OK.

The list of things I CAN do however, is much more exciting...

I can WORK 
I can wear MAKEUP (yay!)
I can have fun with my BUDDIES
I can LOOK after my DAMN SELF

It's been a pretty awesome year, it's been amazing slowly getting all the elements of my life back and becoming the person I want to be :)

Some highlights...

This was Summer in St Helens  January 2017 (one of my favourite places- it was a bit hot so I was hiding from the sun in my beach tent)

My beautiful buddy Katy :)

This handsome guy is my partner of (gasp) eight years now! Without Tomas I absolutely would not have made it through TSW.

Tomas and I after climbing the Stanley Nut in Tassie

Christmas day with my soul sista Elena

Hannah is my absolute best bud and has been an absolute rock for me during withdrawal. This is us at a gin festival a few weeks ago.

This is me today- three years TSW!! Feeling good!!

I don't think I can make any promises about posting regularly in the future- maybe some day there will  be a definite end point, but for now this will have to do.

Thinking of all you superheroes still in the throes of TSW- hang in there, it's worth it xx

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!

Monday, 16 November 2015

334 Days off Topical Steroids

After a bit of an absence, it's time for an update. A great deal has happened since my last post.

I was feeling pretty good for a while there. I guess my body had other ideas though. For some reason unknown to me and I still can't make any sense of it, shortly after my last update my body decided that it had had enough of me being active and doing things, and started overheating like mad, EVERY time I decided to get up out of bed and do anything. Like, to the point where I could not even function. I would sweat like mad, which would make my skin itch and burn like crazy, my head would swim and I had trouble breathing. This was not very fun and this lasted for over a month where all I really could do was lie in bed with my fan on 90% of the time (thank god for Netflix).

During these weeks I was also majorly struggling with bad flares on my shoulders, collarbone and neck. 

I also managed to lose 90% of my eyebrows which was quite distressing.

Fast forwarding to around four weeks ago now, I noticed that I had developed two tiny bumps in the corner of my lip which I didn't really think anything of. A few days later they had spread further across my lip and chin and were very itchy and hurt so much. It had me quite worried so I saw my GP. He looked at it, said it was a staph infection and sent me away with antibiotics. By the next day it was still spreading massively and was so insanely painful my boyfriend had to take me to the ER. The doctor there also thought it was staph and doubled my dose of antibiotics and said I needed to clean my face at home to take care of it. After going home and following his instructions the pain was so intense I couldn't stop crying and screaming so we went back into the ER and saw the same doctor who gave me pain medication and told me to come back if it got worse again.

The next morning my boyfriend woke me up and said we needed to go back into the ER because it had spread further across my face and some of the lesions were turning black which was terrifying.

We went back in and I was admitted. I had to make it clear to everyone there that I could not take any oral or topical corticosteroids which involved me explaining my situation to the many doctors and nurses I saw. All of which had never heard of TSW. Everyone was very understanding and said no one was going to force me to take any and they tried to find a treatment plan that didn't involve me taking oral prednisone which was their first treatment option.

They still didn't know what my infection was but increased my antibiotics dose again and gave them to me intravenously.

Over the next three days my infection continued to worsen and I needed to be on strong painkillers constantly. I was still on IV antibiotics and had taken two days worth of oral prednisone (something I was hoping I would never have to do knowing it would set me back in my withdrawal) as the doctors thought it was my best chance of getting better and I didn't really have another option so I took it. I knew that there was something that the doctors were missing as I kept gettng worse even though they had doubled my antibiotics dose again without my infection responding. Luckily that day a dermatologist came in to see me and he and my doctor finally correctly diagnosed my infection as a viral infection called eczema herpeticum, started me on oral antivirals and said I didn't have to take anymore doses of prednisone (thank god). 

After that I stayed in the hospital for another few days while my infection improved enough for me to go home and finish recovering. It's been two weeks since then and my face is very pink and still recovering but definitely on the mend (when I came home I also noticed that a lot of my eyebrows had grown back so yay). 

This infection was the scariest, most painful thing I have ever endured, but I am thankful that I was looked after by lovely doctors and amazing nurses who made sure I was as comfortable as I could possibly be while I was in such a bad way. I cannot begin to express the gratitude I feel for their thoughtfulness and care, and also to my boyfriend who was with me in the hospital every day.

Luckily during his time my TSW symptoms calmed down enough so that they weren't really bothering me while I was dealing with my infection. The prednisone probably also had something to do with it. Since coming home ny skin has gotten a bit worse, especially on my arms and hands and I feel like my skin is definitely rebounding after taking the prednisone.

So a bit of a warning to finish off, especially to those in TSW, if you have anything that you suspect is an infection, it is very tempting to want to treat it yourself, but go to the doctors anyway to make sure it isn't anything serious and to get the correct treatment. It's not worth it getting worse. Also just make sure that eczema herpeticum is on their radar. The reason my infection got so bad is because none of my doctors had seen eczema herpeticum before and so weren't able to diagnose it and get me on the correct treatment before it got to the point that it did.

So yeah, it's definitely been a rough few months but I'm still moving along (I'm at 11 months TSW now) and as always, still hoping things will get much better soon.

Sunday, 20 September 2015

Day 278 off Topical Steroids: Turning a Corner?

I'm now in my tenth month of my withdrawal and within the last few weeks I've started doing much better (I literally never thought I would be able to write that).

I barely even know where to begin for this post...

I guess I'll start with the condition of my face. Just over a month back my face was still giving me hell and I got so sick of the horrific cycling of red raw- oozy face to skin peeling off every 24 hours that I decided it was time to try zinc oxide paste on my face. Holy cow was that a game changer. Within two days my face had improved tremendously and within a week was the best it had been all year. To my dismay this only lasted a few days and I watched as it slowly descended back into a red horrible flare and I assumed I wouldn't experience any more improvements for months to come.

It's not often I enjoy being wrong :)

I carried on using the zinc paste and within a week the flare had died down significantly (not perfect, but still much better). Since this my face has cycled through 'flares' and 'breaks' maybe four times, with each flare getting less intense and easier to bear, and with each break my face being even better, the shedding and oozing was still happening, but I could see it was becoming less and less intense until this week I realised I wake up and my skin has not oozed at all, and instead of my face shedding huge flakes, it's just a fine layer of dry skin which I can exfoliate off with very little inflammation to follow. Basically this is the most nomal my face had looked all year and I can't believe how fast the improvement came about. 

The photos on the left I took only a few days ago, the bottom photos are what I look like first thing when I wake up and before I have a bath, the top photos are what I look like afte a bath with my skin cleaned up. Looking back, I can hardly believed what I managed to survive.

I have also achieved quite a few things that would have been impossible for me to do up until the last few weeks. I have been trying to exercise semi-regularly after essentially spending 9 months on the couch. I've been doing this at home on an exercise bike or the treadmill, but I've also started being able (and even wanting) to go outside for walkies! I am obviously weak and unfit and I usually get hot, itchy and sore when I do so, but it's so worth it and it's all becoming easier.

The biggest achievement for me was going out in public for the first time all year to go out for coffee with my amazing, wonderful and all-around lovely partner Tomas! It was the first time we were able to spend time together out of the house all year. 

Ahhh he's so cute :)

I was very self-conscious and I wasn't able to stay out for very long, when I got home I was also shaking like a leaf from the anxiety, but I was able to calm down, then go out again to visit my Nan who I have missed so much this year.

I've made it out several other times just for quick errands like picking up some things from the supermarket or Bunnings. I'm also working on being more social, managing to spend about an hour at a friends' for a BBQ, and spending all day recently with my best friend while she was visiting from Canberra.

So even though I'm doing a bajillion times better, there are still a lot of things I'm still struggling with.

I'm still crazy itchy and sore all the time, especially on my arms, chest, shoulders and neck. My hands have been driving me crazy, being ridiculously itchy and dry, and often tear open and form tiny, painful cracks.

My face still also gets crazy itchy and I need to reapply the zinc balm several times a day to stay comfortable. For some reason, I'm also insanely tired pretty much all the time, even if I've managed to sleep fairly well.

I'm also starting to feel the dull ache of boredom. It has just turned Spring here in Tassie and the weather has been lovely and so I'm getting pretty frustrated as I really want to be outside doing fun things and yet I'm still pretty limited in what I can do. But yeah, I'm working on doing more things, and there are much worse things that I could be dealing with, so I'm ok really.

Anyway, I'm thrilled that I am able to give a positive update! 

To everyone suffering- hang in there, it gets better :)

Friday, 21 August 2015

Day 251 off Topical Steroids

I'd like to dedicate most of this post to talking about the condition of my face as the state of my body is pretty much the same as it was the last time I gave an update- itchy and red with occasional cuts and sores but not too bad.

For the past few months my face has been following the same cycle pattern every few days. On the day I have a bath I tend to scratch all the masses of dead skin off my face, and spend the rest of the day with burning red and oozing skin and need to have ice packs pressed against my face all day in order to stay somewhat comfortable. By the next day (usually I don't have a bath) my skin has normalised a bit, but I wake up with lots of dried ooze on my face, and also the skin is thick and raised as if preparing to shed.

Between the following night and the next morning, the skin begins to shed ferociously, to the point where I can pull the skin off with my fingers, and there is red oozy skin beneath it. Then the cycle begins again. I have also consistently had two huge lymph nodes along my jawline (the size of large grapes) which have been extremely uncomfortable.

My face has been doing this every two days for months with no relief whatsoever.

A few weeks ago, I was so sick of this cycle I decided to try using a zinc oxide balm on my face (made by the wonderful Stephanie at The Home Apothecary shop on Etsy). After two days using it on my face, all my skin shed off, but was not oozy for the first time since I can remember and I had maybe a week or so where my face improved a lot! For the first time in 8 months I am able to recognise the person I see in the mirror. My lymph nodes also shrunk considerably at the same time.

My face has gotten worse since this photo was taken, the inflammation and size of my lymph nodes has been increasing everyday but it is still a huge improvement upon what it has been like. It still follows the same cycle but to a much lesser degree than it had before and I am still using the zinc balm everyday for comfort.

Going back to before I started my withdrawal, I spent a few months on methotrexate, an immunosuppressive drug (also used for cancer patients) that my genius doctor thought would help my condition. My health, which I was already struggling with, declined even further to the point where my hair thinned dramatically and I lost 1-2 cm of my hairline. Well...

 It has all grown back really nicely and I am sporting a lovely fluffy hairline ! :)

I'm still so far from being healed and everyday is still pretty much a fight to make it to the next day, but hopefully my progress gives hope to everyone else struggling out there.

Hang in there lovelies x