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!

Just took a warm bath and shower!

Apr 22: I don’t remember the last time I did this. Relaxing in the warm (not lukewarm) water? Exfoliating on purpose? Amazing!

I was giving myself a pedicure and realized how much dead skin I had accumulated. Then I decided I’m going to chance the bath and get all the dead skin of my body!

The bath itself was fairly lukewarm. It started been nice and warm but it got cooler quickly. I soaked and got all my dead skin off. Now, I was naughty and rub/scratched them off. As not recommended this method may be, I think it’s a testament to the strength of my skin that it took the casting and ended up fine on the other side. There was quite a bit of dead skin! Gross! I stayed in the bath for about twenty minutes.

Afterwards I rinsed off… except the water felt so warm and good I ended up showering for about fifteen, twenty minutes.
This is me right after getting it of the shower.

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I’m happy to report my skin is still doing fine! Victory!! During the shower my jaw line was feeling a bit itchy so I was worried, but it’s doing fine. My skin feels fine- no dryness or extra itches. In fact, it looks less ashy when I do scratch. This is probably because I got all that dead skin off. I’ll report back how I do tonight and tomorrow!

Apr 23: the night was good! I think I felt a bit itchier on my face, but I may just have been hyperaware. Day went all well fine, I took a walk for about twenty min and it’s sunny outside and I didn’t feel irritated. My face looks basically the same, maybe a bit more oil. My body skin feels more smooth and supple due to the exfoliation. Overall I’d call my little gamble a success!

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!

 

 

 

Almost month 8 updates

Hello! Two days and one week before month 8 hits! I can’t believe how fast time has been going! My skin is continuing to improve, although my face is still a bit itchy at times.

I want to talk about how my health does aside from the skin. Topical steroid withdrawal affects overall health not just skin. Ever since I’ve gotten sick I’ve had trouble with low energy level- and if you knew me pre-TSW, that would’ve been a preposterous idea. Well, I’m happy to report my energy level keeps going up! About a month ago I went rock climbing.

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It was really hard. I’ve always loved climbing and it was disappointing how weak I has gotten. Then last week I went again and Lo! I am so much stronger!

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I am able to push through the pain! It’s incredible knowing that I am not only healing on the outside but inside as well. I am able to powerwalk for about hour and a half without getting tired. It seems pathetic from where I used to be but considering how I was seven months ago… it’s everything.

I am also happy to report a big milestone- warm shower without pain! Granted it was very short- just few minutes- but it was amazing how far I have come!

Happy healing everybody! Don’t get discouraged!

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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Month 5 timeline

Jan 6: first time I craves the warm sunlight since the is started TSW. I think it’s a great sign! I know rest of America is freezing but SoCal is as warm and lovely as ever. I better take advantage of it!

I decided I’m going to be more proactive about what I put in my body. I already eat generally healthy (Korean food tends to be better than SAD but worse than raw vegan juicing meals) but more has to be done I think. So I am eating about a tbsp of coconut oil, be more strict about gf/lf, eat more veggies and fruits, esp those high in vitamin c, take my gummy vitamins (idk how well it absorbs but it sure is yummy!) and continue to drink a lot of rooibos tea. I ordered chrollela and will start taking that as well.

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As you can see, my body is producing its own oil, albeit not a lot. The bottom is white because I scratched it and the top is normal (complete with oil!) skin color. As you also can see, my skin can now take a bit of scratching without breaking. The skin’s strength and integrity has come a long long way since the beginning.

I realized a while ago that I had already gone through withdrawal my first year of college.

Jan 13: my skin is healing well! My skin are clearly getting stronger everyday. That said my scalp and hands/forearm are still itchy every once in a while. No itch fits though. I’m itch free at least 80% of time.

Jan 15: I cut my hair yesterday which made me feel pretty for a first time in long time! Even though my face is still puffy. I can’t wait till my face gets better even though I know that may be a while because I used most amount of steroids, elidel and protopic on my face. Que triste. As of few days ago I seem to feel overheated when I drink hot things. Coincidentally, SoCal got really hot so I am now sitting in the sun and for the first time in long time I’m sweating a bit. I think it’s a good sign for healing of my insides.

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The lighting for year photos are actually very accurate. Who knew carpet would make a good backdrop. My face is a bit more red than it normally is due to scratching.

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That’s the worst part of my back. Rest have scarring and discoloration but no ooze or scabs or dry patches.

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Mom says the back of my neck looks better than the photo.

In summary:
Nicely healing spots – front of legs, back, torso, chest, outside of upper arm, butt
Getting there- both inside and outside, inside of upper arm, neck, scalp, back of legs, where legs meet butt
Still struggle town- forearm, face. Sigh.

Shitty things about TSW

rated pg13 for language? Or something you have been warned (check out the tag for a sample!)

The horror that is TSW – how I hate thee, let me count the ways.
It’s three am and I have been up for at least two hours scratching and tossing and turning and crying from frustration. For the past hour or so I’ve been playing candy crush to take my mind off of the itches. It worked somewhat. My exhausted fiancé sleeps on after giving me rubs and cuddles, and otherwise generally loving on me in attempts to make me feel better. It succeeded somewhat. He is amazing I love him. When we get married and I’m healed, all the favors belong to him.

So it’s been a while I’ve been this (all consuming itch that won’t go away and won’t let me sleep and it itches in so many places at once I want to be like that one Hindu god with crapload of arms because two is not doing the job) uncomfortable and scratchy. I’ve been good at sleeping for months and to go back to this cycle of scratching and tossing and turning is massively frustrating. For me, the worst parts about TSW isn’t even the physical pain. The worst part about TSW is the way it thoroughly fucks with your mind as it takes you along this roller coaster of a journey filled with highs and (mostly) lows. It’s the hopelessness you feel when you flare up again after seemingly improving for a while. It’s the knowledge that the scabs and oozing patches that are all over your body might not be there if only you had the strength and self control to not scratch (although fuck me if I know how to have said iron will). It’s knowing vaguely that this will all end sometime but not having the slightest fucking clue when that would be. It’s the constant state of fear you live in, not knowing when the next flare will come and push you off the cliff of positivity and into the pit of despair. Sounds dramatic? The amount of feels this illness gives me are most definitely of the dramatic proportions.

One would think that since I have already been through one huge flare, I will meet the next one head on, bravely, assured in the knowledge that if I got through it once, I can do it again. In reality, the opposite seem to hold true for me. Because I already know just how shitty it really gets, if anything I’m more scared. A pediatrician once told me that kids are better at coping with pain because they don’t know any better. I believe it. I guess in the recess of my mind plays the tune “I did it once, I can do it again” in a loop, but in the forefront of my mind stands a boombox, subwoofer and all, and it goes “ah shit shit shit I don’t want to do this again first time was shitty enough I can’t even why nonono” in full volume.

I’m going to have some form of PTSD when I’m through with this.