Hello Stranger (ver 2)

Hi, long time no post.

Firstly apologies for the lack of updates! I just realised that I have not posted anything for the past 1.5 years. When I was deep in the throes of TSW, I remember clearly how reliant I was on the blog posts of others as a means of reassuring myself that I wasn’t alone. Yet here I am not having provided the same form of comfort I once so eagerly craved. Sorry!

Skin update

Where do I start?

Skin has been good. Not fantastic. Not 100%. But pretty good.

There are various ways that others use to gauge how good their skin is: the length of time since the last flare, the intensity of the flare, level of discomfort etc. For me, one of the  ways I like to use to measure how good my skin has been is the amount of time I have dedicated to thinking about my skin and how much my skin has affected my daily life. For clarity, I am only talking about my facial skin and my scalp now because other areas have not provided me with any issues at all over the last year.

Right at the start of this journey, I would say that my skin and its condition dictated around 80-90% of my daily activity. This slowly (and if the bold font isn’t clear enough, I do mean slowly haha) dropped to around the 5% mark as of today. This is to be expected given that it has now been 3 years and 1 month since I embarked on TSW.

I remember that when it first started, showers were an absolute nightmare and I very much dreaded having one because of the way my skin would split open once finished. Showers are now a normal activity and I don’t have to think twice about the aftereffects. I used to avoid catching up with friends because I hated the thought of them seeing myself in that state. Or even if I were to arrange a coffee, I would try to align it with the good phase of my skin. I now don’t give a second thought to arranging activities with friends. In other words, I can freely plan events ahead of time without having to fret about the possibility of a flare.

However there is still that 5% as mentioned above which is centred around my facial skin. Given where my skin has been, this 5% really consists of trivial discomforts but it includes things like eyebrow hair that has not completely grown back, thinner hair on areas of my scalp that I used to scratch quite viciously and the occasional itch (especially when the weather turns hots). Another thing that has been bugging me as well is a raised area above both of my eyebrows that is causing wrinkles to appear on my forehead. I’m not sure if this is a residue of all the scratching on that area but both sides are more raised than normal. My suspicion is that it is still slightly inflamed however it has been a long period of time and other areas of my body aren’t inflamed so am not entirely sure what the cause is.

In saying this, my skin did flare two times over 2016. The first time was in February and it lasted until April. The second occasion was in June/July and it likewise lasted for around 2 months. The first flare was a typical flare for me which involved patches around my eyes weeping (albeit smaller and less intense), really flaky scalp, and sensitive patches around other parts of the face. I’m certain that this flare was stress induced because it started at the same time when I first started work. It was a period of adjustment for me and I was conscious of the stress I was feeling. However the second flare must have just been a normal cycle as I cannot attribute it to anything else. When I say that it was subdued, I mean that I could feel my skin getting more sensitive and flaking at times but yet there were no open weeping wounds.

Other than that, skin has been great and I truly can’t complain. I sometimes still like to rub my face and feel how smooth it is! I would like to say that it is as smooth as a baby’s bum but that would not be doing justice to my skin…..Sorry. Bad joke.

Reflecting back on the past year, it is truly amazing to think of the things that I was able to do without worrying about the repercussions. Things like going for a run and drinking alcohol, all the way to washing my face with water. Really simple things that many take for granted. I must remind myself to not do the same.

Last update skin wise would have to be the fact that I have been seeing a dermatologist. This alone is filled with so much irony because I firmly believe that it was a dermatologist’s negligence who got me addicted to steroids in the first place. But at the persistence of my family, I obliged. Suffice to say that this dermatologist is willing to acknowledge that TSW exists and is understanding to my concerns about using any further steroids. In fact, she recently went to Japan for a conference which touched on this issue and what solutions dermatologists in Japan were using to treat the over-use of topical steroids. But her patience has a limit and I do worry that my attitude and stubbornness is stretching that limit. Despite that I will continue to see her, if anything to prove to her that my underlying eczema can naturally get better with time and that steroids are not a longterm solution. It will be interesting to see what she will have to say for the upcoming consultations.

Closure

With that out of the way, I wonder whether I will continue to update this blog going forward. My rationale behind this is that I don’t believe I am going through TSW anymore or that even if I am going through it, the effect is so minimal that I will not have much to update. If and when anything significant occurs, I will come back and provide readers with an update. But I really hope that there will not be a reason for that.

If anyone has any questions about my experiences or just needs to have a chat, please leave a comment and I will try to respond to it in a timely manner! I understand how crucial a listening ear can be through this period and I will attempt to check back on a regular basis.

On that note, I’ll leave you with a few pictures of myself over the past year. I have chosen photos that aren’t exactly flattering but provide a picture of what my facial skin has been like. So please excuse some of the bad photos or backgrounds haha.

Like many who have gone through this experience, my experience has shown that it can and does get better. Hang in there.

 

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Hello Stranger

Well hello haha. Writing something out here feels somewhat like meeting a friend long forgotten about until one certain day when you happen to bump into them.

This must be the end of month 20 by now? But at this stage, who’s really counting?

By the lengthy period of absence, someone could reasonably induce that the lack of updates must signify a lack of things to update about. And by and large, that would be a fair conclusion. Within the last 6 months of so, my skin has been relatively stable such that even when it flared it did not stop me in my tracks. Skin was its best sometime around early March which continued into April where it went downhill for the month of May (neither the humidity nor the unhealthy food in Singapore had much of an effect on the skin). At its worst, this meant noticeable itch around the same troublesome spots, and the reddening of the face. To my surprise and delight, the face did not ooze much, if any, during this flare. I took this as a really encouraging sign as, in my view, it heralds in another stage in healing; flaring without oozing.

I have come to the realisation that TSW has been and will be a much longer ride than expected. Looking back, I remember anticipating the 1 year mark as I took it to signify either the end, or at least the very final stages, of TSW. However that has not turned out to be case as TSW stretched itself into the 1.5 year mark with no clear finish line. If I’m to be truthfully honest, I would say that TSW would stretch itself out into the 2+ year period until I will be finally done with it. And by that I mean completely without symptoms such as itch, redness of the face, cysts whatnot. In saying that, i feel that I have passed a threshold where I can claim that TSW and its symptoms do not affect the decisions in my daily life. I eat like a normal person (with limits of course. Still try to stay away from too much alcohol or pre-packaged food), sleep according to my timing, shower in really hot water when the weather warrants it (some part of New Zealand just reached -20 centigrade last night brrr) and am able to plan for the future. This has most definitely been the case in the last 6 months of so and I don’t envisage it changing. Thus the fact that I flared without oozing was important to me because based on a roughly uphill trajectory, flaring in the future will be much more comfortable.

I feel like there’s a lot more I could share but am finding it difficult to find any coherent structure to share it in so I guess I will end with this: I’m not done with TSW nor is it done with me. But I feel like I have largely got my life back from the monster that has stolen it and I hope to be able to make up for lost time.

If you have any questions or want to know more about what I’ve been through, feel free to drop a comment or read through my previous pasts as despite the lack of detail, they are depictive of my story and journey through TSW. Hoping the best for all those going through it right now!

End of Month 15

Hi all, long time no talk.

So here I am at the end of month 15. Although it’s been stated many times over, I could never have imagined making it to this day when I first started. But yet here I am. If you are someone who’s stumbled upon this blog and are just starting out on your TSW journey, I hope that you gain some courage and hope from this; the days may seem long at the moment but it gets better.

In brief, the last two months have followed a ‘U” shape where my skin is concerned. At the start of November, it wasn’t in a good state as I believe that I was still suffering from the tail end of my second flare. For a few weeks my face was a little weepy, red and fragile in general. However when the Christmas and New Year’s break came around, my skin started to show signs of improvement including less weeping, minimal shedding and more smoothness across my body. My belief is that it correlates to the lack of stress as I was on the Christmas break of my summer internship, allowing me a chance to catch a breath and put down my worries. Skin was great over that period to the point where I started to catch signs of normal skin peeking through on my face. This also meant that an assortment of other symptoms eased up; showers were much less of a chore than they have been as my face did not weep coming out of them. Overall I could not have complained with the general uptick on quality of life despite it still being sub-par for a person with normal skin.

I do like to think that I am much less susceptible to any further flares having traversed so far on my TSW journey. I don’t mean that I will NOT have any further flares but that even if I do, it will be much more manageable and sustained than the previous two flares. Having resigned to the fact that I am not in control of this monster, I am much more at ease letting it do what it needs to do at this point in my TSW.

In saying that I am still maintaining a relatively clean diet – I have distinctly made sure to stay away from foods high in MSG and sugar. Likewise, I am consuming a lot more vegetables and a lot less carbohydrates than I am used to. I have supported this with vitamins and supplements taken on a daily basis. Although I am not able to attribute any differences in skin from this diet + supplementary regime, I still intend on continuing down this route for general health purposes.

Another point of note is my upcoming trip to Singapore in just under a month’s time. Having suffered a mini flare when I was there last, it would be interesting to see how my skin reactions to the difference in environment. I will report back when I return.

That’s all for now. In general life is much more enjoyable than before and I hope that it only improves from here on in. If I haven’t covered anything in my blog posts that you would me to shed light on, I’m more than happy to answer them in the comments section of posts. Apart from that, I hope that everyone else is going well too.

Tagged

In the absence

So first off, I’d like to apologise for the long hiatus. I had always intended to provide at least a monthly update as a way of both informing future TSW fighters out there what my journey was like, and as a means of providing a diary for myself. I’m not too sure where the past three months or so passed by; it just happened so quick. So I guess it’s time for a skin update:

Within the past three months, I experienced another flare around the month 11 mark. It crept up on me very slowly such that only hindsight was able to show me the warning symptoms. It started off with the little signs such as an increase in itchiness on my ears and an increase of symptoms on my index finger. From there, it blossomed into a full flare albeit much more manageable than the preceding ones. Although I experienced the typical symptoms (ooze on face, itchiness across most of my still troublesome areas) I for one didn’t have a bloated face which I was thankful for. This meant that even if the symptoms were more prominent on my face, I was still able to have the courage to face the world once the day progressed (the symptoms on my face usually subside in their aggressiveness by the afternoon if I leave it alone after my morning wash up).

The same trouble spots still remain. Largely this is to mean my face, a few fingers on my right hand (primarily my index and middle finger), scalp, neck and upper body. My upper body is still in the same condition that it was a few months ago. The flare only really affected the parts of my body from my shoulder upwards.

So in summary, although I did experience another flare, it was liveable and I still went about my activities as per ‘normal’; or at least as normal as I have been able to. Good promising sign? I do hope so.

That said I have finally crossed the 1 year mark! Despite having crossed such a big milestone, I feel that the occasion was buried beneath my flare and exams that I was sitting at the time; I didn’t quite feel the euphoria that I had imagined. If I’m honest, I would also add that I was a bit disappointed to still be at my current situation with my skin at this milestone. I really had imagined that by this time of the journey, I’d be able to look back and be thankful that I am clear of any symptoms; be thankful that it’s all over. However reality often has a way of dashing the dreams conjured up in our state of hope.

In contrast, I am still thankful for how far I’ve come. I can still remember the feeling of being wet and sticky all over whilst lying in bed. The constant smell that oozed out from the wounds all over my body and how the ooze used to feel when it was all dried up in my hands. And that insatiable itch.

Even despite the symptoms I still have now, I am able to sleep well throughout the night. I am able to dress in clothes without having to worry about the ooze. I am able to have a shower without dreading the inevitable open wounds that would result.

I recently made a comment to my mum to the effect that there are so many small (and large) aspects of what I’ve been through this year that it’d be hard to list each and every single one. And I guess that that’s part of the journey in this TSW recovery. That over time, many of them will disappear until one day the list will be clear. I’m still looking forward and eagerly waiting for that day. Until that day, I will still try and live out my life as much as possible.

Next milestone – 2 year mark! Haha I feel a bit greedy having just crossed that one year mark but we all have to have something to look forward to right?

Hope everyone is getting better slowly but surely.

End of month 10!

10 months down, 2 more until I hit the 1 year mark, and ‘x’ more until I’m healed. 

Skin update:

Face has been doing okay as of late. By okay, I mean that it has had minimal oozing and flaking. A layer of skin roughly flakes off every day or two whereas when in a flare, I’d have a new layer twice a day. There are two spots that are however quite persistent in regular oozing and flaking; left cheekbone and right eyelid. These spots are quite sensitive in that scratching will definitely result in ooze coming out. Apart from those spots, I can be quite liberal with my scratching but not cause any ooze to come out. In saying that though, I know not to tempt fate and only scratch to flake off dead skin. A good positive is that it has been less red recently and seems to be more of a brown colour with some pink accents shining through. 

Something that I just realised a few nights ago is that my face hasn’t been itchy (and actually hasn’t been so for a long while). Despite that, the elephant skin and ooze spots still remain. I’d have thought that the two symptoms would go hand in hand but I guess the itch can leave first leaving behind the skin to heal?

Body and armpits are doing fine. To give some point of reference, they feel like they did around the June mark before I left for the overseas trip. I still itch from time to time but scratching likewise doesn’t cause any ooze. 

Elbow folds similarly are also doing fine. There are still some pink raised areas but to an unobservant observer, it wouldn’t be of much interest. Spring’s starting to come around here where I am so I’m glad that I’ll be able to wear tshirts without too much concern for elbow fold exposure. 

Last area of interest would be the scalp which with all the over areas, is also doing fine. It does itch and flake off from time to time but there’s no ooze which I’m quite thankful for. The cleanliness (relatively of course) of my pillow cover is proof of this. I can still remember when I was going through the worst of it, my pillow cover would have ooze marks all over from a few nights worth of sleep. 

If it already isn’t obvious, in general, I’m feeling fine/okay with my skin. I think having come out of the flare that I was in over the late July period, I’m relatively happy to be where I am. Skin in general just feels like it’s in a calm period, just like how it was in June. The only noticeable difference would be my face which is less red and more stable. I guess the fact that I’m able to function and perform like an ordinary person for most of the day is good enough for me at the moment. With the knowledge that I might be in for a longer haul than I had initially expected, I’m learning (with difficulty haha) to cherish the calm periods. Again I just hope though that in two months time, it will show improvements to the point where I won’t be overly concerned about making first impressions on new people for my internship. 

Nothing else is coming to mind at the moment. Sorry for the lack of thoughts/update but I’ve got a fair bit of work to chow through so I guess that’s all for now. Will update again at the half month mark with photos if I can. Hope everyone else is doing well =)

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Month 9.5 update

Hi all

Just wanted to come back here to do a quick update on the skin for both documentation purposes and to update those who are following. 

So skin update:

Face is a little bit better than at the start of the month. It’s mostly less red than before and is also shedding a minimal amount of skin. I usually only wash off dead skin during my daily shower. Apart from that, I hardly feel the need to shed off dead skin. Interestingly the skin on my face still produces a lot of oil as it has always done so I’m not sure if that’s a sign of good things to come or whether I just produce an abnormally large amount of oil. Still have a couple of oozy spots after I come out from the shower but apart from that, face is dry and pinkish most of the day. 

The insides of my elbows are still as they were at the beginning of the month; that is to say there’s still the elephant skin on there with some red patches. It’s gotten a little bit better than at the start of the month but it’s still not at the condition where I’d be confident wearing a tshirt outside. It has dried up more though and scratching doesn’t produce as much ooze as it did before. Sadly scratching still produces that orgasmic feeling (scratching feels so good but is so bad). 

Body is largely the same. Nothing much to update as there hasn’t been any noticeable change. 

I think that I may have had a mini flare with the armpits some days back as they started to get oozy and moist even during the day. That only lasted about a day or two though and they’ve become drier and more ‘normal’ since. Talking about mini flares, I also think that I experienced one yesterday as my face was shedding more than normal. Maybe it’s something I ate?

Only other place that’s stlll affected is my neck and scalp but they’re largely alright and not really causing me any problems. They both do get itchy at times but scratching doesn’t cause oozing or any other side effects. Still shedding some skin though. 

That’s it for now. Hopefully I’ll have something more positive to report back at the end of the month =)

 

End of Month 8

Another month down, another update to add to my list of posts.

 

So as I usually do, we first have a skin update:

I’ve now come out of the flare that I had at the beginning of the month. From start to end, that flare probably lasted around 2-3 weeks. Although the intensity of the flare was no where near the same as the flare I had at the beginning, I feel that it still hit me harder. For those other TSW people out there, I think they will be able to attest to the mental challenge that we encounter at the later stages of our recovery. Thus although the flare was manageable, it was the feeling of helplessness + the feeling of taking a step back after months of calm skin that really got to me.

Body wise, my skin is primarily back at the condition it was prior to the flare. That is to say that there are no oozing spots but rather dry and ‘patchy’ skin that itches a few times a day. For most of the day I can go by fine without feeling any itch. However come night time, I usually get the itch once or twice a night. In saying that, the skin colour has lightened up a bit and isn’t as red as it was pre-flare.

A spot that is still causing some trouble is the inside of the elbows. They itch quite a bit during the day to the point where scratching produces that orgasmic feeling which I’m sure many will be able to relate to. It is still quite red at times and irritated. I’m glad that the cold weather here means that I can cover that part up; hopefully it relents by the time spring/summer weather rolls around.

Fingers are still mostly fine despite having flared a bit during the flare. There’s a small patch near my right wrist that doesn’t seem to want to go away however it does seem to be slowly going away.

Another part of interest would be my neck which seems to have smoothened a lot; TSW symptoms have eased up a far bit. Skin is largely smooth and hardly sheds. I’m also told that it looks quite normal to the unobservant observer. My spotless pillow can attest to this as prior to the flare, I used to get spots of ooze on my pillow from my neck.

Lastly, my face, like most of my body has gone back to its pre-flare state. My forehead to a large extent hardly sheds and is smooth for a little while after I shower (where I wash the dead skin away). Oozy spots do tend to appear after my shower (probably attributable to me trying to wash the dead skin off too hard) but they get better after some time. On that note, skin sheds maybe about once a day. What I mean by that is that I don’t get a feeling to need to wash off dead skin until a full day has more or less passed.

Despite these symptoms, for a large part I am able to go out and attempt to live life as per normal. I say attempt because the condition of my face still haunts me like an overhanging cloud for most of my day. But I still try to strive on. For the most part though I’m glad that the flare ended just as uni started back.

At the moment I don’t have much more than a skin update to talk about. Right now an immediate wish of mine is that my face will be alright when I start my summer internship in some months time.

 

Hope everyone else out there is doing fine =) Till the next post.