Day 686

It’s been more than 2 months since my last update. 2014 was unfortunately not the year I completely recover. My skin continued with its ups and downs, good and bad. I may be still recovering, but I know that 2014 was better than 2013, and 2015 will be even better. After the initial first 8 months (I started withdrawing in 2013, Feb), I had a longer than usual break. During that period, my skin was almost normal and life returned to normalcy. The calm stretched on from late November to mid march. The next series of flare resumed somewhere around late March, lasting until July. I then had a short respite until around mid September before the flare came back. It lasted about a month. Since mid October, my skin has been relatively calm and good. I recognized this extended break from my previous one last year. Hopeful that the duration of this break can surpass that of last year.

It is a wonderful feeling when the skin is good and all is well. Having less than desirable skin transcends way beyond just the physical realm. I must have forgotten what confidence feels like until my reacquaintance with it. I am definitely not where I want to be yet. The past 2 years has done serious damage to my esteem. I am grateful for this opportunity to get my life back. I am turning 23 this year and am sure life’s best moments lie ahead of me. I am prepared to have subsequent flares come my way this 2015. But I am confident that they will be overcomed. The light at the end is even clearer now. That pot of gold is real.

Stay strong fellow skin warriors, whatever the phase you are in right now. Things will eventually come to an end. It won’t rain forever.

Day 618

It’s been quite a while since my last update, and in case any of you are wondering as to the current state of my skin, I reckon it’s time for an update. School started in August, and having just came out of a flare that spanned the June-July period, I was having relatively clearer skin then. I then had a flare between mid September and mid October. The flare wasn’t like the multiple episodes of rage I had experienced earlier on in my withdrawal. It was kinder, though still intense enough to inflict on me misery and a very heightened sense of self consciousness, especially so when I was constantly in the company of other students – some of whom I had to work with. I was scratching and shedding quite a bit. I couldn’t sleep very well at night. Compound that with work in school, September-October wasn’t exactly easy.

By mid October, I was clearly coming out of another flare, and for the past 2.5 weeks, my skin has been good. I am back to wearing short sleeves and Bermudas in school – something of a necessity given the humid and warm weather here in Singapore. I am sure there will be more episodes of flares to come, but I am just enjoying my break for now. I am now past my 20th month, and really hoping for things to pick themselves up from here. I have been indulging in unhealthy allergic food ever since coming out of the flare, and am quite confident to say that there is no direct causative relation between diet and my skin – at least for myself. I have always been cautious with what I put into my mouth for fear of allergy, but I guess they were all unduly.

Exams will start at the end of the month, shortly after which my first semester in university will end. I will post more pictures on my flares and recoveries then. For now, my skin is good and may it remain so!

Day 547

Month 18.

I had a flare from month 16 – 17. The worst affected areas were my fingers, to the extent I was not able to hold a pen, as there were deep cuts on the joint regions. This heavily compromised my ability to move my fingers, and rendered my hands almost completely useless. They eventually dried and improved – thank God! I have totally regain the full function of my fingers and hands, but the skin around my wrist and fingers remain dry and red. They go through cycles of peeling and inflammation, again and again. The back of my knee was also affected, together with my pre orbital and arm flexures.

It is becoming more difficult for me to differentiate between a flare and a rage, which was characteristic of my TSW journey so far. I guess the intensity of my flares are becoming less intense, but I am in no way comfortable yet. I have got substantial healing to accomplish.

I notice that certain parts of my skin, in particular my arm flexures are constantly rough, hyper-pigmented, thick and wrinkly, but they definitely look less like eczema but more like damaged skin due to intense and prolong scratching. They might be in the ‘stagnant phase’ where the skin is no longer eczematic. Rather what remains are the remnants of decade long steroid damaged skin.

Life is pretty livable now, if not for the fact that school has started 2 weeks ago. I do feel extremely self conscious and insecure when I am in the company of my lab mates and group partners – which unfortunately is really stressing me out. Otherwise, I feel pretty comfortable when I am alone, as I believe that people will not notice my skin condition while passing by me on the road.

Otherwise, there is nothing much to update on my skin . I am not healed yet. Not yet.

Just to add, I understand that healing is subjective. I do have very high expectations of healed skin. My skin right now may be, for some people, ‘almost healed’. But as long as I feel largely uncomfortable, I consider myself a long way off normal healthy skin. Might do a picture update some time later.

Day 487

Month 16.

Yet another month down. Skin continues to improve over the past month. I remembered hearing people say that sun exposure in the latter stages of TSW is a godsend. I presume that I am in the latter stages of TSW – hopefully. In brief, my steroid history is as such: used steroids between 7 years old and 20 years old. Between this 14 years, there were periods of up to 4 years accumulative, where I did not use steroid. Within this 10 years of continual steroid use, I was on milder corticosteroid intermittently. It was only on my final year that I started using stronger steroids in crazy quantities. I used more steroids in my final year than I did in the past 13 or so years. With this perspective, I always thought I would heal fast. 16 months is way off even my worst projected estimated time of healing. And I am not done yet.

I started moisturizal withdrawal at around 4 months. I religiously ate the cod liver tablets and drank apple cider vinegar. I drank on average 3-4 liters of water a day. Yet I am healing so much slower than I expect. It seemed that I am missing sunlight. Ever since I started TSW, I avoided the sun like a plague – for obvious reasons. I was out only at night.

Could this be the reason for my slower than desirable recovery?

I do not know, and probably will never know, since there are way too many factors governing the speed of our healing. My genes could be working against me for all I know. Or maybe my steroid addiction is more severe than I postulate it to be. This theory seems to ring true in that the duration of your steroid usage – however disrupted and non-continuous – determines how long it takes for you to be healed. While the strength and quantity of the amount of steroid used determines the intensity of the withdrawal symptoms. I might have used relatively milder and lesser steroids than most other skin warriors, but my duration of use is longer than most of them (in the region of 5-7 years). Could this be the reason why my withdrawal is taking longer than I expect. Though I have to say that the intensity of my symptoms are milder relative to most.

This are all theories and conclusions I come out with the keep myself motivated and sane. At 16 months in and not healed, it sometimes get a little more difficult. It is important that I give myself the best possible conditions to recover – even if they are not going to help one bit. At 16 months, I decided to get sunlight. For the past 2 weeks, I have been getting regular sunlight (30mins a day). My skin has healed up well. The healing coincided with my healing phase so I cannot be absolutely certain that sunlight was the cause for my slightly accelerated healing. But it is a fact that month 16 is better than Month 15. Hopeful that Month 17 will be even better.

School starts in 1.5 months. Hope to be skin ready for it.

Stay strong everyone.

Day 456

Month 15.

A short update on my skin. My 4th rage started early April, lasted for about a month. The first 2 weeks of May was good. My skin started to heal and recover – clearly out of the rage. Back of knee, arm flexures, neck and wrist all healed up quite significantly. Until about 5 days ago, I started to scratch and tear my skin open again. Right now skin is better than it was during the rage, but not as good as it was during the first 2 weeks of May. Skin is now dry and slightly rashy with a few open wounds. Pre orbital and oral area are itching much more over the past 2 week. I sleep at normal times, but don’t sleep very well at night – not too bad either. But I am feeling lethargic most of, if not all the time.I avoid going out unless necessary. Sweating still makes me itch and scratch. I guess not using moisturizer helps in that it makes my skin tougher – as a result of the dryness – and less easy to tear open when I scratch. In fact I no longer suppress any urges to scratch. I just scratch to my hearts content whenever I itch.

My vision has been slightly blurry since 2 weeks ago. I initially thought that it was due to a lack of sleep as was the case 2 weeks ago – I just could not sleep or sleep well. But after having decent rest, they are still slightly blurry. Hopeful that this too will pass.

School is starting in slightly under 3 months. Really hope that my skin would be kind to me. Cannot imagine having to juggle school and TSW concurrently. They just don’t go together.   Here is to hoping.

Day 429

Almost one week into my 14th month, and – from the looks of things – probably many more months to go. Shortly after my last post in early March, I experienced yet another flare. My skin got itchy, red, flaky and rashy. My skin gradually worsen before culminating in my 4th rage. Areas affected, in order of severity, included the back of my knee, neck, arm flexures, wrist, stomach and pre orbital/oral area. Calf and shin are slightly affected. Small independent patches of dry itchy skin appeared on my torso – but they are going away.

As usual, the back of my knee is the worst off. I scratch almost every night before I go to sleep (I scratch only a bit in my sleep). There is slight oozing. The scabs that form are thick and most probably solidified ooze. The rash creeps a little into my thigh – just a little. Next would be the entirety of my neck, from the base (collar bone) up to under my chin and on my jawline. Repeated cycles of itching, scratching, reddish flaking, and smoother skin. It still feels rough to the touch at the moment. Arm flexures also undergo repeated cycles similar to my neck, as do my wrists. Stomach, and face is dry and itchy.

Though the amount of smooth skin on my forearms are increasing. They are getting smoother as well. Inner thigh and outer thigh is smooth as well. My shoulder, biceps and upper arms has been smooth and normal a long time ago, and they remain that way. Those were the last areas to develop eczema.

At 14 months, I truly thought that I would be completely healed. When I started out, I was fully convinced that all it takes was upwards of six months. It then became a year and subsequently a year and a half. It was inconceivable – then – that I would still be in the thick of things past the one year mark. Fast forward fourteen months, and that duration might has just passed the three year mark. The fact that my skin does feel much better today than it was last year; that the flares have grown milder, that the struggles today pale in comparison to those of the past; provides for stern affirmation that I am healing – whatever the pace.

Just a little worried as school is starting in 3.5 months time and being mired in this flare makes me all negative and pessimistic. Not too mention my messed up sleep cycle again.

 

They don’t look as bad in photo .

Day 376

I am past the one year mark! I am much better now as compared to when I first started out, though I am still some way off normal skin. Things are looking optimistic and I look forward to the days ahead. I really hope that the worst is now over for me. I have experienced a lot over the past year. I was dealt physical and emotional setbacks. I survived, learnt a lot and grew stronger. I will be starting school in August and – after a year’s respite – I can’t wait to return to school.

Having been through a year of withdrawal, I shall share some of my experience with those who just embarked on this journey. These are my personal takeaway and advice and I hope they will be helpful to you.

1. You have to plan.

For most long term users, the withdrawal will take a substantial amount of time. At least a year to be better. There will be a ‘dysfunctional’ period, when the skin is having a bad flare, where there is just no way you can carry on with normal daily activities. I mean working or studying. I had a problem even taking care of myself. During my worst, I laid on the sofa all day long. I had problems walking as the skin would tear. I needed my parents to buy food for me. For some a caretaker may even be needed to do the house chores. I would recommend not working or studying during this period, [1-1.5 years]. I myself took a year off school. [A big big decision for me]

 

2. Everyone’s withdrawal is different.

For some they would be in constant agony throughout until they get better. For me, I had distinct ups and downs. When experiencing a ‘down’, I was just a wreck. But when experiencing an ‘up’ I was almost normal. I was fooled a few times into thinking that the worst was over, went to work, and got found out. Not to mention the emotional roller coaster.

Bottom line: For long term users like us, a realistic window would be between 1 and 2 years before the skin gets significantly better for us to get on with life. It probably would take upwards of 3 years to be completely healed.

3. TCM, Supplements Homeopathy & Alternative Medicine

I was drinking TCM herbs at the beginning of my withdrawal, for like 4 months. On hindsight, it did not help one bit. Personal experience tells me nothing helps during TSW. The only way is to have the right mindset, and grind it out. We are extremely vulnerable during withdrawal. We get easily convinced that vitamin pills or whatever remedy will resolve our predicament. I would suggest not throwing hard earned money away. They probably would not work. And also, for long term users like us, the worst of our withdrawal may not hit until 6 – 9 months later, for some even a year later. It is always good to be mentally prepared.

 

4. Discuss with your family members.

You would need their support. Inform close friends that you may have to ‘disappear’ for a while, and that they will understand.

5. Moisturizer withdrawal

It is helpful for me. It takes a while to get used to it. Without moisturizer, the skin gets really dry, wrinkled and tight. Moisturizer withdrawal intensifies the flare, but it seemed to shorten the ordeal. I highly recommend moisturizer withdrawal.

 

Day 346

My skin continues to improve, albeit really slowly now. I feel that I have entered into the ‘stagnation’ phase where improvements are becoming less discernible as has the flares become less painful. From mid November ’13 to early January ’14, my skin was almost ‘normal’. I was in the post ‘rage’ period – spanning July ’13 to August ’13 – then, and caught a glimpse of the life that would have been if I had never gotten addicted to steroids in the first place, and the imminent life that will be come the end of this ordeal. The past three weeks saw my skin turn bad and itchy – predictably, as my withdrawal is characterized distinctly by ups and downs. I scratched and picked at my skin. But the intensity of the flare was mild compared to those I endured earlier into the withdrawal. The three week flare seemed to have passed and my skin is entering into yet another post flare period. Flares are now much more tolerable and less agonizing. The overall health of my skin has improved tangibly.

In my previous post, I classified my skin into three categories – Primary, Secondary and Tertiary areas with differential addiction to steroids. Approaching the one year mark, I will say that the tertiary areas are 100% healed, while the secondary areas are almost 100% healed. All that is left are the primary areas behind my knee, on my wrist, on my neck, folds on the arms and pre orbital area that will need more time.

I started my steroid withdrawal in February ’13. I started my moisturizer withdrawal in July ’13. And since then I have not looked back. Making that decision to withdraw from moisturizer was as painful, considering that I have been using moisturizer for as long as I have been using steroids. But it was also a necessary one – in my opinion at least – and I am glad I realized that early. For those who have just started out on this journey, the outlook may be bleak, the circumstance painfully hopeless and words of encouragement become mere platitudes. But tough times will pass, they won’t last. And when it all ends, you will hardly even remember the pain you went through to get the gold.

That was me during the July – Aug ’13 period.

 

 

The state of my skin as of today, 2nd Feb 2014.

Day 314

2013 has been a wretched year for me. I started my withdrawal on the 22nd of February 2013. And for the next 8 months, I struggled badly with TSW. At its mildest, I functioned almost like a normal person. I even went to work between April and June. But the whimsical nature of this withdrawal means that at any moment, the ugly head of TSW will turn around to confront – nary a warning. I suffered badly. At its worst, I was thrusted into the deepest pit of despair. Wallowing about the mire, there was scarcely, if any hope. Thoughts of throwing in and giving up surfaced. Doubts began its slow descend onto me. I began scrutinizing the decision I made and wondered if I had got it all wrong. Things eventually improved and by late October, the worst was clearly over.

Just when the light at the end became discernible, my world had to crumble. My grandmother passed away. My dearest kin, the women I loved the most. My friend, motivation, emotional dependence, listening ear, companion, my everything was gone – all so suddenly. I knew that I had spent little time with her that year due to my skin and was already planning on spending a lot more time with her in 2014. I was looking forward to the days ahead. Every single day into this withdrawal was one day closer to recovery. The number of days became of great significance to me as they bring me hope. The hope of once again seeing her and spending quality time with her. I did not visit her for over 3 months. She wanted to visit me some time in August, but I rejected her request, as I was in a messed back then and did not want her to see me in such a state. She never will visit me again. My life has been so profoundly changed by this loss. Things will never be the same again.

To all skin warriors out there. Whatever the phase of this journey you may be in right now, suffering is but a common denomination. Do not deprive your family and friends of the desire to visit you, if they genuinely would like to. Do not shut yourself up and lock yourself in. Open up to them if they want to talk to you. I understand that you may be feeling down and do not wish for any visit. You may not want your loved ones to be worried when they see you in your current state. You may not wish to talk much about your predicament. But remember that for those who truly love you, the double blow of seeing you in this state and yet unable to do anything to relief your pain is more than what you are going through. Having experienced for myself the pain I felt when my grandmother was suffering in the hospital – while I was helpless – I cannot imagine the pain I would have to bear had she not allowed me to be by her side, for fear of getting me hurt. I would be devastated.

Treasure those whom you love and who love you. Do not be distracted by affairs of this world. Do not let materialistic pursuits lead you away from the things that really matter in life. Human relationship is the only thing that will last. Everything else is but temporary. The sense of achievement and satisfaction of success will mean nothing if our loved ones aren’t there to share the joy with us.

2013 has been a wretched year for me. It might have been a bad year for many, especially fellow skin warriors. But regardless of what is to come along this journey of uncertainty, one thing is certain. At the background of most of our busy lives lie a group of people. They may not be occupying the central stage. They may not even be in the foreground.  But we know that they will always be there, whatever happens.

A new year begins with resolutions. Make pushing them into your central stage one of them.

Day 271

I am 2 days away from my 9th month. Skin continues to improve. I am now able to leave my home clad in a short sleeve top and bermudas, without feeling too conscious about my skin. My sleep is almost normal. At this instant, I would say that I am 80% healed. A little dry patch behind my knee and on my wrist. My neck and stomach itch a little bit. Forearms have almost recovered. Facial skin is now almost normal. Inner thigh is smooth. Calf itches a little.

I am not sure if there will be further dips in my skin, but I am confident that would there be dips, they will be minor and short lived. One thing that I would like to point out – Moisturizer recovery does seem to speed up the withdrawal. I stopped using moisturizer for 4 months now, and I never regret one bit. Go check out moisturizer withdrawal, I am confident that it could be the key to shortening this frightening withdrawal.