I’m still alive!

Hello everybody! 

I have been meaning to post 1 year anniversary post as well as other posts but I’ve been too lazy/enjoying my last month in Melbourne. My skin has been ok. At one year mark (8/19/14) it was doing better than it is doing now. I must be in an “anniversary flare.” I also have been eating out a lot which means I wasn’t strictly following the Autoimmune Protocol diet. Oh well. It also coincided with my period, so I guess it’s bad timing! The skin has been worse than it has been in the past couple month, but it’s still very much manageable. I still sleep really well. I am more itchy in the arm, face, neck and scalp, which is unfortunate, but still, pretty manageable. 

Photos galore coming soon, I promise! I hope everybody is doing well!

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Month 8 skin pictures

Click for bigger pictures if necessary! Super happy with the progress I am making!
Still doing MW, still sleeping really well (7-10 uninterrupted hours), still eating relatively clean, not taking any supplements, still drinking lots of rooibos tea.

back torso

back torso

front torso

front torso

outer arm, left

outer arm, left

outer arm, left

outer arm, right

inner arms

inner arms

front of neck

front of neck

back of neck

back of neck

front of legs

front of legs

back of legs

back of legs

And there’s my whole body! Kind of weird that the internet knows what my body looks like in detail, but I hope it helps!

Healed from topical steroid addiction?

What does being healed mean anyway? I was talking to the husband yesterday about how nobody really seems to know what healed means. There are people who claim that they are healed but they still flare here and there. Then there are those who feel better, and look better, but have been withdrawing for less than a year so they don’t get to claim they are healed. Those people are only on a break. Then how about those who have been withdrawing for years and are flaring? Are they not healed either? Or should they say that they are just on a break as well? If you are at 4 month and you feel better you have to watch our for month 6 flare. Then month 9 flare. Then month 11 flare. etc etc. When does that end?

That’s the thing I wondered about the most. There are blogs that claim to be done, but you never quite see what happens afterwards. There are very few who continue to update their blogs, with pictures, after their self proclaimed healing. The how do we know they aren’t just on a prolonged break? Did they ever flare again? How badly? Are your skin still sensitive? Dry? Do you have eczema patches that comes and goes? How do you treat it? Do you treat it?

If you define healing as “back to normal” then are you referring to back to “normal” when the steroids were still working? Because that’s not fair, as eczema was being suppressed by the corticosteroids. “Normal” when compared to other people in the world who never had skin problems? That’s not really fair either. Besides, for those who are going through moisturizer withdrawal, you then would be comparing yourself to “normal” people who are wearing moisturizers. That’s a unfair comparison.

Granted, with a lot of disease there isn’t a definition of being “cured.” You’re cured if the medicine worked (therefore the diagnosis was correct) and you feel better.

The following pictures show the worst parts of my skin right now. Face and left inner upper arm. Ridiculously enough, now my skin produces too much oil and I have pimple problems. There’s no winning is there aha. Nonetheless, I’ve never been so happy to see pimples! I think now it’s time that I start washing my face or something. I haven’t chanced taking a long hot shower yet, but I did take a short lukewarm shower and I was doing fine! I feel my energy is starting to come back and my main concern is discoloration.

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I will update with more pictures later tonight, hard to take pictures of your back by yourself. I tried, I really did, but my contorting can only take me so far aha. Will I claim I am healed? No, because I would still want my skin to become a bit better. And I have the time to do so. However, I know that I don’t really think I will be flaring again. I feel my energy increasing. I itch very little (less than 20 times a day, less than 3 seconds at a time). When I do scratch, it’s usually because there is a tag or a hair or something. I don’t really see any new patches cropping up. My skin continues to produce oil, although it can produce a bit more. Furthermore, if I stop improving now, IT WILL BE OK. I CAN LIVE LIKE THIS, HAPPILY. The discoloration will go away in time, and the dryness is nothing a light coat of oil can’t fix.

Well, whatever may happen, I’ll be sure to keep you all posted!

I went shopping for clothes today! (+ tips for shopping with TSW)

You would ask what’s the big deal?

The big deal, as those who live with me know, is that I LOVE clothes. But during the worst of Topical Steroid Withdrawal, I lived in a sack.

No. seriously. I lived in a sack. It was depressing. and ugly. For the sake of my poor newlywed husband, I wish I was kidding, but I donned the ever so fashionable sack, with no undies. Because my skin down there liked breeze. (TMI? sorry not sorry?) I was in too much pain to care about what I looked like, and even if I did care, the clothes that I could wear was really limited. Too tight, was bad. Too short was bad. Too much fabric was bad. Light colors were out. Thick fabrics, also out. etc etc so I lived in a sack.

I would post actual picture of me in my sacks (I have acquired about 5) but ain’t nobody who needs to relieve that.

But today, I went shopping! I’ve been needing some basics (I lost I a lot of weight) and Nordstrom Rack has additional 25% off clearance items so off I went! I would say this is a huge mile stone for those battling through Topical Steroid Withdrawal. The reason is two fold: 1. You have the energy to go out and stand amongst strangers for hours and hours (yes I like shopping that much) 2. You want to and get to wear lots of different, pretty clothes again! And you can try on clothes without worrying about getting blood and ooze everywhere!

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outfit 1!

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outfit 2!

I think healing from TSW is two fold – physically and consequently mentally/emotionally. Going through TSW does a number on your mental and emotional well being. Hard to feel good about yourself and care about other people when the only thing you can think about is how much pain you are in RIGHT. THIS. MOMENT. I feel that being able to go shopping and feel pretty and happy about how you look is a HUGE step towards complete healing from TSW.

That said, if you need to go to shopping in the midst of Topical Steroid Withdrawal, here are some tips.

  1. Don’t go unless you feel up to it/ you absolutely have to because shopping is hard work when you are sick.
  2. Shop online! This way you get to try on the clothes in the comforts of your home, which will get rid of your social anxiety that accompanies TSW. Amazon Prime (free trial available!) and Nordstrom is the best – Free shipping and return!
  3. If you have to make the trip out/are willing to make the trip out cover your skin. Wear something cotton and thin – like a tank top or a low cut long sleeve shirt – so you don’t have come in direct contact with the new clothes. Wear something thin and tight on the bottom as well.
  4. Narrow down as much as possible before trying clothes out. You want to minimize try-ons, if you are in the middle of a flare. More movement = More pain
  5. After purchase, WASH the clothes before you wear it out! This should prevent lots of irritation from excess dyes, etc.

I hope the tips help! Happy healing and as always, let me know if you got any questions!

 

 

 

Month 7 update

Hello!
I ended up not putting up month 6 photos.. Oops. But it was basically the same as I do now, but the teensiest bit worse. I am still not using any moisturizers. I am still drinking lots of rooibos tea in lieu of water, and trying harder to eat gluten free now – I have gluten sensitivity but I’ve also been baking a lot and I was naughty the past few weeks. I try to avoid msg as I’ve always been sensitive to it. For supplements I started to take activated b12 (methylcobalamin). I’ve been taking vit d, vit c, and “complete” vitamins which includes bunch of vitamins and minerals. That said, I am not very regular about it (I’m a bad patient) and the latter two are in gummy bear form so they are delicious but i don’t know how effective it is.

My skin is doing awesome! It no longer consumes my life. I’m itchy here and there for few seconds at a time. Definitely nothing to upsetting. My face and scalp seems to be the itchiness. The most promising thing is the strength of my skin. Whenever I get itchy I just itch because 1. It doesn’t last long, nor is it intense; 2. My skin is strong enough that I don’t do any damage to it. The worst I’ve done is fingernail sized scab, which does not ooze and quickly scab over, or more commonly just white fingernail streaks which eventually goes away as oil comes back on the areas. Sweating has always made me itchy and it still seems to be the case. When I do yoga, Pilates, or go for a walk I try to not get sweaty.

As for other Topical Steroid Withdrawal related symptoms, I don’t really have any. I’ve been sleeping well for few months now, I seem to regulate temperature well. I haven’t had bad nerve pains in a long time as well.

All that to say skin is no longer the evil overlord of my life. Now the pictures!

Taken at 6.75 month

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Taken at month 7

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Mainly discoloration throughout my body as it figures things out. I’m thankful for the progress!

Disneyland with Topical Steroid Withdrawal!

I won’t say that I am healing really really rapidly since I know people go are going through TSW get breaks. However, I am doing really well! I still get tired very easily, but aside from that the itch is very mild. My skin is so much stronger it’s incredible. Even my arms, which is one of the more affected area, could be scratched without breaking. That said, on picture it may look worse because when I manage to break skin (which is becoming increasingly less frequent) I don’t ooze, I bleed. As a result, I have few scabs up and down my arm which looks more damaged than it is. I’ve been really taking advantage of this break time to hang out with friends, go out with the husband, rock climb with the sister, wear short sleeves, and go to Disneyland, courtesy of the husband’s cousin! And I had the best time, TSW or not, and manage to stay there from 10am till 7pm!

I went on all sorts of rides, both in Disneyland and California Adventure. I haven’t been on a roller coaster in years, and I forgot how amazing it felt! The adrenaline rush really kept me going, far past how long I would be able to last. I took pictures with Winnie and Eeyore and it was a blast!

Some tips if you suffer from TSW (or your friend/family) and you are planning an outing:

  1. Tell everyone. Husband’s mom, who came from Australia (!), and his cousins were all aware of my condition and didn’t have any trouble letting me rest when I needed to. This is huge because I definitely still feel some anxiety when going on outings and stress will definitely lead to more itches!
  2. Have an exit plan. My mom came along, in a separate car so that whenever I got tired, I would be able to go home. We arrived there at 10am, and I thought I would be able to last till 3pm (5 hrs on feet!). I lasted much longer, but that’s another bullet point. Others were planning on being there past 8pm, so having an exit plan will go a long way towards keeping the anxiety at bay. Be realistic about your energy. TSW is a serious illness and you shouldn’t expect too much from yourself – that will lead to a ruined day.
  3. If possible, go on a cold day. I think this varies from people to people a bit, but ever since I got sick, I definitely don’t get cold as easily. I think this is because I am constantly pretty inflamed and cold air feels really great on my skin. I know sun does great things as well (and I do sit outside when it is sunny) but for prolonged period of time, I think sunny and subsequently sweaty would have been traumatic for my skin. When I went, it was an overcast day with a little bit of rain on and off. In my opinion, this was perfect. That said, I live in Southern CA and my “cold” means 55-60F, nothing below freezing or anything. I’m sure  below freezing has its own traumas.
  4. If going to a place with lines, minimize it. Thanks to our cousin, we had Fastpass that minimized standing in line. This was a life saver. When I stand in line for 60 minutes, there is a huge difference between 10 min standing /10 min seating and being on my feet for 60 minutes straight. Being able to go on rides quickly – the max line was about 15 minutes long- allowed me to last till 7pm. That was the longest I have been out since I got sick! 9 hours outside!! TSW-ers know how big a deal that is. So, if possible, try to get lots of mini rests.
  5. Be occupied/distracted. You definitely will scratch less if your mind is distracted. In terms of this theme parks are great! I know when I was too busy being enraptured by Winnie the Pooh (yes I am a grown woman, yes Winnie is still the best!) skin was the last thing in mind. Also, do not underestimate the power of adrenaline rush. I thought I was getting tired, and a roller coaster ride really picked me up. The rush does wear off though. That said, as said above, I’m doing very well. If I was still as bad as first few month, an outing would have been unthinkable.
  6. Dress in thin layers. I decided I was doing well enough to wear jeans. That was a mistake! Sometimes awkward places itch, and jeans were just way too thick to scratch above to feel better. In public, you can’t just stick your hands down your pants to relieve that itch, so wear thin layers that you can scratch above to do the trick. This will also help immensely in keeping your temperature at an optimum level. Also,
  7. Don’t be afraid to show some skin. Honestly, people aren’t judging you as much as you think they are – they are too busy doing whatever it is that they are doing and if they are judging you, they are ignorant assholes anyway. Because my arm and face is worse off, keeping the area cloth free really helped allowing the cool air to calm it down.
  8. If following a diet, pack lunch. I know a lot of people who follow specific diets. Don’t add to the stress of trying to find and buy a meal that will meet your standards. If following that diet works for you, don’t give it up just because you are out.

Tl;dr – Try to take as much precaution to be as comfortable as possible as anxiety/stress is your ultimate enemy and enjoy your time!

Don’t push yourself too hard, when you aren’t well enough you will be miserable. But push yourself a bit as you may be better off than you think you are and a bit of fun may just be what you need! You can see how much fun I had. Here’s to more fun days!

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Four month picture update

Here is the pictures. Looking at pictures from month one, I have come a long long way. The lighting is so hard to get right with my iPhone and so I include multiple face and arm pictures taken from various lighting. My skin is definitely stronger and I think I’m getting stronger internally as well!

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I think the picture taken furthest away is probably the most accurate depiction.

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I am definitely going through a mini flare – I woke up once or twice and scratch my arm wound like crazy. Edit: just started my period, flares always come when I have my period Hence the red raw skin. My butt looks like that but worse and more scabby and oozey.

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There are actually quite a bit of soft to touch, almost normal skin on my back and stomach. My nipple oozes just a bit now, nothing compared to what it used to be.

If you have any questions or want better pictures, let me know! Happy healing everybody!!

Four month down – quick update

Oh tsw, you suck.

Back when I still was using topical steroid, I had a random thought. It was the night before a banquet – the type everybody dresses up and look really pretty. My main worry was not what dress I will wear or other silly girly thing. I was worried about my skin. Then the worry projected into the future and I thought, “gee it would suck if on my wedding day my main worry would be my skin”

Well the worry may be painfully spot on. My skin seems to be doing ok, especially when I consider how far I am (not far) in my journey. I sleep really well, and there are good chunks of time -about an hour or so- that I don’t even think about my skin because I’m itch free! When I say I sleep well, I mean usually (~75% of the time) I don’t wake up for about eight to ten hours. It’s amazing! When I do wake up though, I scratch away and I become a bloody mess. Despite the improvements, however, I wonder if I’ll be presentable enough at my wedding. I think the worst thing about tsw is not the pain and itch itself. It’s living in constant fear of the next flare. I live in fear and worry, scared that I will unknowingly eat the wrong thing, do the wrong thing, be at a wrong place and I’ll be a itchy oozing bleeding mess.

So I worry. Currently my face and lower butt is the worst area, so I worry. In the end I know it’s about the commitment and the man I will promise to love, but I can’t help but wish my skin will behave and I will look good on my wedding day. A part of me is considering going on immunosuppressants, but last time I was on it I had the different type of infections on my face, so I’m worried it might make the situation worse. And if I remember correctly, it didn’t help too much anyway.

Pictures will be coming soon. Overall I’m grateful for the progress I am making, but of course, I wish I could be making it faster. I am currently off traditional medicine, as of about a week and half ago, and been eating all the meats. We shall see how that fares with my skin.

Month two (really week nine and ten) update

Oct. 22: I have been put on more potent traditional medicine. Not sure if that’s what it was, but I was doing a lot better for about two weeks. I was sleeping a lot better, had bit more energy. Then this Sunday I got another flare and became a blistery itchy person again. Still, I am not oozing as bad as I had month one, which has been a huge relief.

Nov. 4: woe is me my skin decided that it doesn’t like me again. Less of the blister cluster this time around though. Actually like none at all. I’m just very itchy and skin is raw and uncomfortable. I have to move very gingerly because it hurts to move. Bless the boy’s heart he scratched my back and generally tried to distract me from the pain. The raw patches of skin is oozing, but it is nothing compared how much I used to ooze and how much people on the forum seemed to be oozing. Fight on skin warriors! (That sounds Trojan-esque… oops). I am still extremely dry and flaky. Face skin is rough to touch. Scabs everywhere! Yum. I’ve noticed that when I am having rough day, the normal skin/tsw and therefore red skin demarcation on my wrist gets more noticeable. I am sleeping much better though! The past couple nights were a bit more difficult since I was more itchy, but it is still better than in the beginning. Nerve pains are less severe and happen less frequently. Woo!
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Oh and hair loss! I’m losing so much hair whyyyy. My eye brows have definitely shed and is attempting to grow back. My hair just seems to continue to shed. The swelling of the face however went down a bit.

Six week update

Woo it’s been a month and a half! Yesterday was my first “good” day since I moved back home. I wasn’t super depressed! In fact, I felt motivated to prepare my own food and eat it! It’s a big deal, as sad as it may be. I gotta celebrate any and all victories! And I slept really well yesterday- so not last night, but the night before. I went to sleep before midnight, and never woke up! Last night however, I woke up couple times and was itchy. The saying one step forward, two steps back is really true with tsw. No matter, I will still celebrate because I feel better than two days ago! I had a flare and was the most uncomfortable I had been recently. I couldn’t sleep, spent four hours in the tub, was miserable when I came out, itchy, ooze, stressed and depressed mess. There were tiny vesicles everywhere, and one light scratch was all it took for the top layer to completely break and start oozing. It’s ridiculous – my epithelial layer’s integrity is completely compromised. My face feels like thick sandpaper. A lot of that is starting to flake over though, I’m hoping I will have at least few days of respite before the next flare, but we shall see!