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

Sunday, 19 July 2015

214 Days off Topical Steroids

So I'm now a few days into my eighth month (seriously when did that happen) and it's time for a skin update.

Please enjoy my many photo collages, they took a great deal of time and effort to make...

About six months before I went off topical steroids my feet broke out in a nasty rash. They were red, itchy, cracked and dry until I started my withdrawal where they cleared up very quickly (interesting eh). They flared briefly early on in my withdrawal but honestly they haven't bothered me since and now the skin there is more or less perfect :):):)

Throughout my withdrawal, my legs have been pretty bad, but probably the area that has been the least bothersome to me compared to everywhere else. They have been pretty itchy, prone to developing oozing wounds when scratched, and quite red. These days they are much less red and itchy. They still get a few small cuts and scrapes occasionally when I scratch them, but nowhere near as bad as they have previously been.

My stomach, sides and back all seen to be in a similar stage of healing. They all flared horribly in the early months of my withdrawal. Now they are all much improved, still itchy, a little red and occasionally develop small wounds from scratching, which heal in a few days.

My hands were pretty slow to start flaring, with the infamous 'red sleeve' developing over the first few months. The burning inflammation reached a peak around March-April, and since then the inflammation has faded somewhat, but my hands are still dry, leathery and just overall rashy. I have also developed rashes on the palms of my hands which I have never experienced before.

My arms have been inflamed and rashy fairly consistently throughout my withdrawal. They have improved slightly, but are still very uncomfortable and itchy (I haven't been able to wear sleeves over them for the past 7 months).

My chest has been a problematic area for a long time. It has improved greatly but still nowhere near back to normal. It is consistently lumpy, itchy, inflamed and the skin is thick and leathery. I was also having a great deal of trouble a few months back with hundreds of tiny oozing bumps along my chest/boobs. Thankfully I can say that the skin on these areas is 95% back to normal (left only with a small amount of redness).

My poor ears really struggled in the first month. The picture also shows that I had a great deal of thinning hair and scalp flaking. These areas are mostly back to normal.

My face has been by far the worst area by far throughout my withdrawal. Looking back at old pictures I can definitely say that it has improved, although I'm still struggling a great deal with oozing, shedding and raw, burning skin (enough to prevent me from functioning normally or leaving the house).

For the past six months I have needed to have a bath every day to endure the pain and discomfort of my skin (on my worst days needing to stay in for 8 hours to cope with the pain). The last month however I have managed to cut this down to every second day which is a huge relief for me as I can manage to not have ice packs on my face on these days and just overall function a bit better.

I really struggle to take care of my hair while I'm feeling so rubbish. My brain just doesn't allow me to invest energy into properly washing and brushing it. So over the past month I have been only minimally taking care of it, and by the time I properly got to thoroughly brushing and washing it last week, to my dismay I pulled out several chunks of tangled hair due to it being so long and unruly, so I decided it was time to try cutting my hair by myself as I wasn't comfortable going to the hairdresser. I am stoked with how it turned out and it really helped me to feel like myself again. I realised how important it is to do things like this as its really easy to lose yourself in an illness and forget who you are.

Clearly I have a lot of healing left to do, but I'm starting to see myself in my reflection for the first time in a very long time.

In general I'm still just trying to make it through each day best I can, I have a lot of days when I feel like I'm going backwards and things are hopeless, but I am starting to have a few good days every now and again.

Sunday, 21 June 2015

Things That People Going Through TSW Want You to Know

I recently read a fantastic article about the things that people with a chronic illness want you to know and I thought I would do a post on (you guessed it):

Things That People Going Through TSW Want You to Know

1. It's not just really bad eczema

While some of the symptoms mimic traditional eczema such as itchy rashes, the severity of these symptoms we experience are like a thousand times worse and often covering 100% of the body, and we are also hit with other symptoms common to drug withdrawals, such as insomnia, anxiety, tremors, inability to regulate body temperature... The list really goes on and on. Sometimes the withdrawal symptoms can be so severe people end up in the hospital. This condition is serious business and we just want it to be treated as such.

2. It affects our lives in every way

We are in physical pain, we are emotionally exhausted, we are psychologically traumatised, we are socially impaired and we are economically depleted.

3. Healing is not linear...

Unfortunately, healing for us doesn't involve slowly getting better and better until finally we are well again. The process involves feeling worse, then a little better, then worse again, than even worse, then little better, and on and on it goes until finally we are healed. It sucks and this roller coaster can be completely heartbreaking at times.

4. ...And it takes a bloody long time 

For the majority of people, the healing time seems to fall somewhere between 1 and 3 years, and for some it can take even longer than this. So please don't ask us things like "aren't you better yet?"

We probably won't be and it will just makes us sad.

5. It is not our fault that we have this condition

Even though we have made the decision to stop using topical steroids, that does not make it our fault that we are sick. Unfortunately the blame for our condition lies with the doctors that prescribed us topical steroids over and over again for years without considering the damage these drugs were doing to us.

6. The majority of us cannot find a supportive doctor to help us

For some reason, doctors are burying their heads in the sand about this condition and refuse to believe that topical steroids have caused the damage to our skin that we are displaying. They do this in spite of the fact that this condition has been known about for more than ten years, there are several journal articles published in decent medical journals and also it says on the lists of side effects never to use for more than two weeks (which every doctor I have ever had has told me to ignore and to use for as long as I needed).

7. Doing pretty much anything for us is an effort

We are constantly experiencing some level of pain and discomfort (speaking only for myself I am itchy and sore 100% of the time) and often we are extremely sleep deprived so most of our energy goes into just trying to cope. As a result of this things that most people do without having to think about (washing your hair, doing dishes, going to the supermarket etc.) takes a hell of a lot of energy for us to do, and it often comes at the sacrifice of being able to do anything else for the rest of the day (Google the 'Spoon Theory'). 

8. Sadly, that includes things that we may really want to do

Such as seeing family and friends, exercising, leaving the house, even anything that we may do at home to keep ourselves distracted. For me, I haven't been able to leave the house more than a handful of times in the past six months, my mum and sister always have to visit me at home, and even small bouts of socialising can cause me to badly flare pretty much instantly. On my really bad days I can't even knit to keep myself distracted.

9. Sometimes we may look a bit better than the last time you saw us, that doesn't mean we are feeling better.

In fact, often we feel worse. Our skin can look alright but still feel sore and like it is burning. TSW is weird that way. 

10. We need lots and lots (and lots) of support from our friends and family

Going through this is hard. Really hard. And lonely. Many of us have to withdraw from life for a long time. Many (myself included) have had to stop working and seeing friends. Often we can't even look after ourselves and have to rely on other people to do things for us (standing ovation to all the TSW caregivers out there including my wonderful boyfriend). 

11. We appreciate that you want to help, but we really want everyone to stop giving us unsolicited advice. 

We aren't stupid. We've spent more hours than we can count doing research and already tried a million different ways to help our skin over a number of years. Don't tell us we need to change our washing powder or try a particular cream that is labelled hypersensitive or try some magic strategy that your neighbour used on her baby to help her rash. There is no secret solution to help us that we just haven't found yet. No cream, oil, supplement or diet change is going to make us better, the only thing that heals us is time.

So I'm saying right now, we don't need you to fix us, we just want support. So just ask how we are and listen, it means more to us than anything else. 

12. We frequently worry and doubt ourselves...

We wonder if we will ever heal, how long it's going to take, if we are making the right decisions in how we look after ourselves, if the worst of our withdrawal is behind us or still to come, if our bodies are permanently damaged, what people are thinking when they look at us, if we will ever get our lives back...

13. ... But we know we are doing the right thing

Speaking only for myself, I can say that in spite of the terrible pain and suffering I have experienced for the last six months, I have not regretted my decision to stop using topical steroids and go through withdrawal for even a second. 

While on topical steroids, the life I was living was not life as it should be. I was completely dependent on a dangerous medication, and even though I was using it every day, my skin was still so bad that it was stopping me from doing many things. Going to work or uni or out socialising was very challenging because of my levels of pain and discomfort, and in the months before I stopped using topical steroids, my health declined to the point where doing these things was nearly impossible.

I know that even though this process is awful, I am doing it to get my life back, because I deserve to have a normal life.


14. PLEASE don't tell us to stop scratching!

It's counterproductive and we HATE it! Scratching is a response the body has to feeing itchy. It is a reflex the same way that breathing is a reflex. So you telling us not to scratch is like us telling you not to breathe. I cannot stress this enough. Plus the level of itching we experience can be insane.

The only thing that saying this achieves is to make us feel horrible and guilty for not being able to stop and mad at you for not understanding that it's not under our control.

If you absolutely MUST say something, tell them that it's ok to scratch, to be gentle and that everything will be ok.

Monday, 18 May 2015

Day 168 off Topical Steroids

Well this condition really is a very 'day-to-day' thing.

Barely a few days after my last post and I started getting worse again.

The nature of this condition is that one gets worse (a 'flare'), then a bit better (a 'break'), then worse again, and so on until one finally doesn't experience withdrawal symptoms anymore (however long that takes, for many people it takes years).

Because I have had very strong symptoms constantly since I started my withdrawal, it is hard to tell if you are in a break, that is, until you start getting worse again, and then you know you are going through a 'flare'.

I have been in a flare pretty much since my last post where my condition has been noticibly worse. I've been enduring pretty much every classic symptom: itchiness has been ramped up a few levels, scratching causes skin to form oozing wounds so I'm covered in sores, sleep disruption (though nothing as bad as the early months where I could not sleep at all), my face has gotten much more red and oozy (so devastating especially as I was so excited to see it improving just a few weeks ago) and just generally experiencing a lot of pain and misery.

Still stuck in the bath everyday.

Still need ice packs in my face pretty much all day everyday.

Currently in my sixth month of my withdrawal (bloody hell that went fast), hoping the day comes around soon where I can start to do things outside of the house again!

Thursday, 14 May 2015

Day 148 off Topical Steroids

Hello everybody!

Wow! A whole month since my last post and I finally feel like I've been making some progress.

After MONTHS of the skin on my face getting worse and worse with no relief, in the last month it has started feeling a lot better! 

Obviously it's still nowhere near back to normal but I'm feeling a lot better which is what's important and being able to see actual progress is unreal!

The rest of my body is doing ... Ok. Still rough, itchy and red but I'm generally in a lot less pain and I haven't had any oozing sores for while now that I am thinking about it. My upper body is definitely worse than my lower body. My chest/boobs are still inflamed and oozing but they are also slooooooooooowly getting a little better.

The thing that excites me the most is being able to sleep!!!!!!! 

In the last month my sleep has normalised so much and I'm sleeping better than I have for as long as I can remember. No doubt this is helping with the healing process and obviously I'm a lot less grumpy due to sleep deprivation which no doubt makes my boyfriend happy.

This process is hard and one of the things I hate the most as someone who has always been very independent is the feeling of being completely useless. A month ago a typical day for me involved not sleeping for more than an hour at a time, face and chest oozing all night, jumping in a bath the second I woke up and having to stay there all day (up to 8 hours) just to cope with the huge amounts of pain and oozing skin, getting out to have dinner with everyone, and going to bed as soon as possible so I could have the fan on my face. Also for the past five months I have required an ice pack on my face pretty much all day long to ease the burn and discomfort.

 I had a very special day this week. I ran my own bath and made my own breakfast, I only needed to stay in for two hours. I then got out and made my own lunch and did a load of laundry (and put it out) and vacuumed and made my bed. I felt confident enough to answer the door for the postie (who brought me my new ugg boots). I made dinner for everyone and cleaned up (something I have not been able to do since living with my boyfriend's family). I also only needed an ice pack on my face for a few hours which was awesome. I also may have played something like six hours of Skyrim that day (a brief three-week long obsession until I accidentally deleted my game yesterday. Totally devastated but I am a strong woman and I will endure).

I did all the things!

A month ago even doing one of these things would have been an impossible task.

So to sum up, skin still struggling, but I am making progress and starting to feel more like myself. I am actually smiling and laughing a lot more which is something I haven't really felt like doing for a long time.

Hopefully things keep getting better from here :)

Tuesday, 14 April 2015

118 Days off Topical Steroids

It has been a very, very difficult few weeks.

I believe I am still in the thick of my withdrawal symptoms. However every time I think I must be in the worst of it I end up taking a turn for the worse and subsequently turn around and laugh at my former self for thinking this. Silly girl.

I've gotten a great deal of support through this blog which has been amazing with people from countries all over the world reading it. What is really cool for me is having people contacting me because of it, as I started this blog mainly for other people going through this hellish withdrawal process themselves, and also to raise awareness about it, which I think I am doing so I am happy about this.

However what is so difficult is people I actually know, friends and family, seeing what has been happening to me. Writing posts also involves a whole lot of reflection and reliving of horrible moments that have happened so I can share them here. I think that is probably why I leave such a large time gap between posts.

Anyway. I managed to make it to an appointment to see my doctor after several months of the pain being so insane I couldn't even fathom leaving the house. He briefly forgot my situation and asked me if I had burned my face. Ah. No sir. The point is I had a swab test done on my face as he was concerned that I had a staph infection on my face which sure enough I did. After two courses of antibiotics the infection on my face is gone and my symptoms (which are still just terrible) look more like normal topical steroid withdrawal symptoms.

This was a few weeks ago now, and since then my face has cycled between dried oozy skin in the morning, and burning red skin after my bath. For a few weeks now as well my face has been oozing constantly, not just at night. However within the last week or so I believe I have started to see skin forming over my raw, oozing face for the first time in a very long while. This skin is fragile and weak and tends to come off with rubbing or scratching my face but nonetheless it is still skin. My face is still a mess but hopefully change means progress is being made. I still get very sad looking at my face, this was this morning. 

My flaring patches have spread properly to my eyelids so every morning they are crusted shut which is why my eyes are half-closed and sad-looking in this picture. Also I was sad. My eyes have also been oozing significantly so my eyeballs are irritated and very red all the time.

The rest of my body is still pretty much the same if not a bit worse. My whole body is inflamed and red, dry and covered in oozing sore patches.

My chest/boobs have been severely inflamed and oozing and the past few weeks it has been 24/7 oozing instead of just at night. Fortunately the inflammation had dried up a lot over the past few days and I'm getting a bit of relief in this area.

I have also started to noticed that I have lots of enlarged lymph nodes in many parts of my body such as my neck which I will have to keep an eye on.

My mindset has not been great. I have been trying really hard to stay positive but honestly some days there is just no way to do that. The best I can manage most days is to live in the bath and stay as distracted as I possibly can (thankyou Netflix).

I have lots of love and support around me which I am so grateful for, and a very special boyfriend who refuses to stop calling me pretty so I guess things could always be worse.

I hope all the red skin warriors out there are coping, I'm thinking of you all Xxxx

Wednesday, 18 March 2015

Day 91 off Topical Steroids

So I've been absent from my blog for the last month or so now and I wish I could say it was because my skin hasn't been bothering me and there has been nothing to report.

Unfortunately that is not the case and I've spent the last few weeks rather miserable and dealing with quite a lot of pain, making it a real challenge to focus on doing even small things like watching TV, let alone sitting down and writing a post. 

Anyway. Time still passes and I am three months into my recovery!

My face continues to be an absolute mess. It oozes like crazy every night shortly after lying down to go to bed (I definitely think lying horizontally has something to do with it). I then wake up with my face covered in a thick, sticky, crusty layer of dried ooze and skin. My eyes have also been pretty irritated as I'm pretty sure the ooze comes out of my eyes when I rub them. A few weeks ago some spots on my face started to bleed instead of ooze which I think is a sign of improvement. Even so, it's utter shite and waking up to this every morning is an absolute nightmare.

Good news is, soaking my face while I'm in the bath allows me to wash off the crust and blood and I can spend the day being slightly more comfortable although the skin on my face is quite raw afterwards. The cycle begins again once I go to bed. 

The rest of my body is also pretty bad. The overall skin tone of my body has turned from white to red. It is still very itchy (worst at night) and very dry. It is also very fragile, and scratching now tends to tear away skin to create a raw, oozing wound that usually takes a few days to heal. These wounds are extremely painful and I usually have 15+ spots like this on my body at one time. I also have several patches of my chest that are extremely inflamed with hundreds of very small blisters-like bubbles that have been oozing at night for the past month or so and I need to sleep with old tshirts wrapped around my chest. Over the last few days this oozing has subsided slightly.

 I am also just generally cut up and sore everywhere. 

My 'red sleeve' has continued to spread up onto my hands.

The pain is usually worst when I wake up first thing after a full night of scratching (these days I feel like I've been attacked by a cheese grater), and to get through the day I jump straight into a Dead Sea Salt bath and stay there for a few hours. This seriously helps with the pain, and also allows me to clean my face of blood and dried ooze, and also heaps dry out and heal the wounds on my body.

Apart from general pain and itchiness I am experiencing, I'm still barely sleeping (maybe three hours a night if I'm lucky), and I'm also experiencing a lot of shaking and anxiety for some reason starting in the late afternoon.

To cope I'm taking a long bath every day while listening to music, watching plenty of tv (Grey's Anatony and My Kitchen Rules), playing lots of Crash Team Racing on PlayStation with my boyfriend, and working on my cross stitch. Even so, things are feeling very monotonous and I am over not being able to leave the house. But you know, soldiering on.

Tuesday, 17 February 2015

Day 63 off Topical Steroids

So I'm now a few days into my third month of my withdrawal from topical steroids and almost can't believe how quickly the time has passed. 

The last few weeks have been rough to say the least.

My face has been having a very hard time. A few weeks ago I was having trouble with thick, cracked lizard-like skin on my chin, and around my lips and eyebrows. It was horrible enough even in those localised areas and I was terrified that this would happen to my whole face. Unfortunately this is exactly what happened and was every bit as awful as I had imagined it would be. The skin on my whole face also became so tight that it was as if I had been given Botox injections. I couldn't smile or laugh without the skin around my lips literally cracking open and bleeding, and I could barely open my mouth to eat or talk. I was nearly defeated in my attempts to eat most things except Lindt dark chocolate squares The skin has been so rough and uncomfortable that I need to wrap a very soft scarf around my face at night because even lying my face on the pillow is so uncomfortable and painful. My face has also been 'oozing' serous exudate, which is a very common symptom of people going through withdrawal. It usually only happens of a nighttime, when I scratch or sometimes even when I just lightly touch my face. The amount of this ooze is sometimes very small but some nights it's enough to saturate several tissues. It is sometimes clear or sometimes bright yellow or orange. It is so gross and an absolute nightmare and I hope it doesn't last too much longer. The last thing my face has been doing is shedding the top layer of skin daily. I will usually wake up with a thick layer of scaly skin and dried ooze on my face. This is what I woke up to this morning.

After I soak in the bath for a few hours (more on this shortly), this crusty skin will dry out and flake off, revealing a layer of shiny, red plasticky skin, and then I go to bed and the next day this all happens again. This cycle has been happening every day for the last few weeks and it's pretty distressing but I know that this is how my face is healing from the damaged caused by topical steroids. With each layer of damaged skin shed, I can feel improvements. Slooooooow improvements. My skin is a little less rough, I have small patches that are clearing around my forehead and nose, and the elasticity is slowly (oh so slowly) coming back so I have a little more facial mobility. 

The rest of my body is still continuing to get worse.

The red, rashy skin has spread to approximately 60% of my body, with my upper body still a bit worse than my legs being about 80% covered. This skin is itchy, uncomfortable, scary thin, easily damaged and very very sore. When scratched, my skin will often form sores that weep and ooze.

The red skin is covering my arms stopping just short of the wrist (there's still about 1cm of white skin left) and goes all the way up to my shoulders.

My back, stomach, chest and sides are all covered (making it very difficult to find a position I'm comfortable sleeping in).

I'm still having a lot of trouble sleeping. I frequently don't even fall asleep until after my boyfriend has gotten up for the day. Occasionally I will be able to fall asleep at night, but it's only usually for an hour or two. I will usually be able to get a few hours of sleep of a morning, however a few nights ago I was not able to sleep all night or even in the morning which was truly awful. My doctor gave me a prescription for temazepam to help me sleep which I have tried on a few occasions and unfortunately doesn't do anything more than make me slightly drowsy. Not being able to sleep has been particularly bad as I tend to scratch most when I'm half asleep in bed which I can do all night long if I'm awake so I often wake up with painful, raw skin.

The only source of relief I have is from having long warm baths with either Dead Sea Salts or bentonite clay. Before my skin was this bad I would only need a bath every few days, now unfortunately I need to jump in the bath the moment I get out of bed and spend a few hours there otherwise the pain during the day is too great. The baths are great for pain relief, drying up and helping to close over any broken skin, and gives me a few hours where I can have full facial mobility.

I have also been essentially housebound for the last few months, and although God knows I love knitting or cross stitching all day, this is beginning to weigh on me.

Entering my third month of my topical steroid withdrawalis interesting as most people find that the first three months of their withdrawal are the worst, and things get better from there.

Unfortunately, my gut is telling me that I am going to keep getting worse for at least another few months, and it will be a long time before I see any significant improvements.

Anyway, here's hoping I'm wrong.

Monday, 2 February 2015

Day 47 off Topical Steroids: photo update

It is a really difficult thing to do to take photos of yourself while going through withdrawal. Just looking in the mirror for the first time everyday takes a few minutes of mental preparation and some deep breaths before I see just how scary I look and how much damage I had done to myself from a full night scratching.

However, I have stayed pretty committed to taking pictures of myself everyday to document my progress through my withdrawal from topical steroids. And even though the last thing I want is for anyone to see me while I look so horrible,  I think it's important to show photos of myself on this blog, in order to show everyone the damage that prolonged use of topical steroids has done to my skin. I also think it's important for people who are thinking about going off topical steroids to see what happens during withdrawal in order to prepare themselves, as I did before going off them. Although I'm not sure my photos do justice to just how bad my skin has been unfortunately.

Since my last post, my skin has just been pretty bad, but somewhat manageable. 

My arms are the worst that they have been so far. The rash that started on the inside of my both elbows has slowly spread up and down each arm, and starting to form the 'red sleeve' that is a common symptom to most people going through topical steroid withdrawal. It is quite red and itchy but not too bad most days.

My chest and stomach have been pretty bad since I started flaring again a few weeks ago. The rash has been consistently raw and painful, with some days being better than others, and within the last week the rash has started spreading across my previously clear back. Apologies for the weird frame around some of the pictures I only just noticed it and can't be bothered doing them again.

My legs have remained mostly clear throughout this process (but still pretty itchy). However in the last week or so the back of my knees and inner thighs have been pretty red and sore, but they don't really bother me too much.

The part of my body that has been hit hardest by withdrawal symptoms is my face and it has been flaring pretty much non-stop since my withdrawal started. I have not experienced facial swelling since the first few weeks, but within the last few weeks I have been experiencing thick, cracked, oozy and crusting skin around my chin, jawline, mouth and eyebrows (and my eyebrow hairs are hanging onto my face for dear life). I am also experiencing a generally high level of red, burning and shedding skin.

Over the last few days especially my face has been especially oozy and it has developed patches that will ooze at the slightest touch.

I have also been having a lot of trouble sleeping. Most nights I am not able to get to sleep until at least 4am, and then I wake up regularly until I feel like getting up in the early afternoon.

Good news for me though. A few months before I started withdrawing from topical steroids, my doctor had me taking the immunosuppressant methotrexate which caused a lot of my hair around my hairline to fall out. The bald patches I had are finally filling in so I have lots of short fluffy hairs. I'm just crossing my fingers that I don't lose hair again due to the withdrawal as this happens with many people.

To finish off, in my last post I mentioned that a news program here in Australia was going to do a story on topical steroid withdrawal. I don't particularly like the program, but they did a surprisingly good job of it, although they did miss a few crucial bits of information about topical steroid withdrawal. They didn't mention that it is caused by doctor's overprescribing this medication, and unfortunately they didn't mention itsan.

If you missed it when it aired or you don't live in Australia you can watch the news story here, but be warned, you will want to throw things at the dermatologist that they interviewed.

Wednesday, 14 January 2015

Day 32 off Topical Steroids

So it has now been one month and one day since I stopped using topical steroids  (and also nearly 8 weeks weeks since I have used and emollients or moisturisers). This is the longest I have gone without using any of these products in at least four years and that's amazing!

I celebrated my one month off topical steroids yesterday by spending the evening hanging out with my boyfriend and eating Chinese food from my favourite restaurant.

It's been just over two weeks since my last update because my skin came out of a flare within this time and I had nearly a week of relief. It was a week where I didn't spent much time thinking about my skin.
Anyway, in my last blog post I was having a great deal of trouble with splits in my neck, along with flares on my face, chest, stomach and thighs.

For about a week after that post, the rashes on my body didn't really change, not really getting better or worse, while my face and neck got a little bit worse. A big symptom I experienced around this time is something that I can only describe by calling it 'lizard-skin', which I had around my eyes, neck and jawline. This skin was scaly, cracked, dry and so thick it felt like armour. Being on my eyelids and neck made it painful and sometimes impossible to move my neck in any direction, or open my eyes fully, so while experiencing this I had to do a whole lot of moving my whole body movement if I wanted to look at something or getting people to move into my field of vision if I wanted to look at them.

Then about a week ago I came out of my flare and went into a skin 'break'. The rashes on my body cleared up. My arms, legs, shoulders and chest were 100% clear, with my stomach only mostly clearing up. My face and neck were still flaring, but my face was a little bit better, the 'lizard-skin' disappeared and it was overall a lot easier to deal. During this time my neck splits slowly got better. My ears and scalp, which I had also been having a lot of trouble with, also got around 95% better and looked and felt almost normal (they were previously crusty, oozing and flaky).

During this time, my body was still itchy, but scratching caused very little if any damage or inflammation, and was probably 80% less dry than it had been during my first flare, and there was even a day or two where I didn't need to vacuum my bed sheets when I woke up in the morning. It's really hard to explain just how big a deal this was to me on those days. I was also sleeping a lot better during this time, most night falling asleep straight away, having a few hours in a row, and only waking up once, where usually it takes me several hours to fall asleep and I wake up many times.

So this break was nice, and it coincided with my best friend coming to visit so I was feeling pretty normal for the most part and I was well enough to hang out with her which made me pretty happy.

I started flaring again a few days ago. It started on my chest, stomach and in the crooks of my arms. My face is significantly more red and dry, and whilst most of my neck is ok, my jawline, lips and chin are covered in sores and the lovely 'lizard-skin'. My ears are also flaring again slightly.

As always, in the midst of this horrible ordeal, there are always positives to think about.

I have plenty of time for the hobbies that I never had enough time for while I was both studying and working. I have nearly finished knitting a jumper that I have been working on for the last year, and I am also working on a Hogwarts Crest cross stitch (because cross stitch is cool!)

Something I am weirdly happy about is that last night, I started sweating! Now while for most people this is not a big deal, but being on topical steroids for an extended period of time paralyses the sweat glands so people whose skin is dependant on them don't sweat, and I haven't in years, which never even occurred to me until I listened to Dr Rapaport's teleconferences on the itsan website (I seriously recommend listening to these they are so full of information on topical steroid withdrawal). So sweating is a good sign in the healing process.

Lastly, really good news for people going through topical steroid withdrawal in Australia, a news show called A Current Affair is doing a story on Topical Steroid Addiction and Withdrawal, with several people I know of through my Facebook support group being interviewed for it. This will be amazing for raising awareness for this condition in Australia so hopefully the story will do justice everyone suffering from it. It is airing either Monday or Tuesday night so if you are in Australia please look out for it, or it should be available on the interview later this week on the A Current Affair website so give it a look.

Thursday, 1 January 2015

Day 16 off Topical Steroids

Happy New Year everyone!

Just wanted to give an update on what the last week or so has been like, as I have a few bad days, but also some (relatively) good days.

Lucky for me, on Christmas Day, the redness and swelling on my face and neck subsided quite a bit and has since been in a period of massive flaking and shedding. It has been uncomfortable as I can hardly move my face most of the time and quite frankly it's pretty gross as I leave skin everywhere I go, but I am seeing improvements. My neck has been causing me quite a bit of grief over the past few days. It has developed splits in the creases and whenever I scratch it even slightly it weeps and oozes (but interestingly it doesn't bleed), then forms a crust which makes it nearly impossible to raise my head or move my neck at all. It is also very itchy which makes it very difficult for me to leave it alone so that it can heal.

The rest of my body was doing mostly ok for a few days around Christmas, maybe getting only slightly worse every day. Within the last five or so days however I have had a few nights where I was not able to control my scratching and the rash had spread onto my chest, stomach, arms and thighs and is now quite raw and very red and painful.

Other than this, my ears are still a weepy mess, and I constantly have them wrapped in tissue to mop up the ooze, and to deter me from touching them. The skin around my eyelids and eyebrows, instead of normal skin, is thick, cracked and oozy. My general itch levels are for the most part, only slightly higher than when I was using topical steroids, with occasional itch attacks. My whole body is quite dry, with the areas affected by withdrawal symptoms are much worse than the rest of my body. Something else I have been experiencing since I stopped using topical steroids is weakness and shaking, which occasionally escalates into violent tremors. However, there isn't really any pain associated with this symptom (except mildly aching joints from the shaking) so it doesn't bother me too much.

I have continued taking bentonite clay internally everyday when I get up, and when my skin is particularly raw and painful, I have been taking bentonite clay baths, which seem to help.

I am still not using any moisturisers on my skin, and just letting my body do what it wants to do. I'm still very uncomfortable, but I think using moisturisers would make me feel even worse.

In spite of everything there have been some positives.

Christmas Day was spent with family and I was very spoiled, making it one of the best I've had in years.

The areas of my body that have yet to be affected by topical steroid withdrawal symptoms (such as my hands) actually look and feel better than they ever did while I was using steroids on my skin. So I'm trying to enjoy this while it lasts.

I had a blood test done at my doctor's request to check the functioning of my thyroid, kidneys and liver as he was worried that going off topical steroids may affect these organs and everything came back normal which was good news. 

Finally, my family and boyfriend are supporting me while I go through withdrawal so I don't have to worry about working which is a godsend as there is no way I could work in my condition.

So all in all, this process has been pretty painful so far, but I am coping, and preparing myself for it to get worse.