Month 17.5 – HUGE FLARE :(

Well, it was good as it lasted! What seems to be the break is over. It was insane how fast my skin got bad when it seemed like it took forever to heal. Within two days of posting the 17month update post, skin started to go down hill and hasn’t stopped. Yesterday I took a sulfur bath and right now I feel less inflamed and more dry. Perhaps it is helping. I don’t actually know.

I have a feeling I am allergic to cats and I was around one for about a week which did not help with my skin. I think. I don’t actually know. Its extremely frustrating why I flared again when I was doing so well, but all one can do is hope it will go away! It’s disappointing as I was excited to be with my husband when I was all healthy, but alas.

My skin is terrible. It is a full body flare, I am covered in hives all over my body. Arms, neck, scalp, and face are the worst but my torso, back, legs, and butt are bad as well. In addition, I have tiny blisters on my feet and hands which were never affected throughout the entire topical steroid withdrawal, so I am a bit worried. Skin that is not covered with hives are strong and moisturized, although unfortunately there aren’t too many of those. My neck, scalp, and behind my ears were oozing a bit, it seemed to have subsided now, but who knows. For now I will continue on with the sulfur baths and hope it helps.

Thankfully itch isn’t too bad. I definitely am a lot more itchier, but I can sleep through the night and itch is not all consuming. That is another confusing thing for me actually -I am not even itching that much but the skin seems to continue to get worse. Mind boggling this topical steroid withdrawal! 
Mentally I was pretty depressed for about a week and a half as I saw my skin go downhill. It was devastating to realize I had to suffer again and I was not, in fact, done with this shitty process. That said, I definitely have more energy now than I did during second and third flares… Which is weird because I think my skin is far far worse. Confusing. I am trying really hard to stay positive and happy. My husband is as supportive and loving and generally awesome as usual and for him I am trying really hard to remind myself of the blessings in my life and it is mostly working! It’s hard work to remain upbeat- don’t let anyone tell you otherwise. Chronic illness is a bitch and if it affects how you look, it’s a double bitch! But we still have control over how we feel and I am choosing to feel blessed and happy.

Pictures will come at 18 month update next week. Hope everyone is having a better skin day than I am!

17 month update: DIET MATTERS!

Hello everybody!

I am very well! Haven’t had a flare in a while. I just had a 28hr flight and while skin dried out a bit nothing happened that doesn’t happens to normal people. Considering I don’t even use moisturizers, my skin did fantastic.

That said, the past month or so I have been very bad about my diet. I am allergic to chocolate and shrimp. I also seem to be intolerant to gluten and lactose. Alcohol is just bad for everybody. I have been having all of the above and my skin is the worst it has been today than it has been for months! I broke out into hives that are mildly itchy. While annoying, I am not worried. I guess it’s annoying that I know my skin will continue to be sensitive, but I am also very relieved that I know what triggers my skin.

I have also been feeling sick and my period is about to start which negatively affects my skin as well. Honestly though, considering how I used to be, I’m not complaining! I am cautiously thinking what I have is no longer topical steroid withdrawal but just eczema. The hives are all located in the usual areas I had eczema as a child.

While for some diet does not affect their skin, it clearly affects mine. If you have been going through topical steroid withdrawal for a long time and still are struggling, I highly recommend you look at your diet.

1-26-15 (worst in months! No moisturizer used)

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1-23-15 (before departing for 28hr flight)

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1-20-15

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MERRY CHRISTMAS!

Last Christmas was a struggle town for me. This Christmas I feel awesome! I went to see Christmas lights and ran into friends from both Hugh school and college! Here are some pictures!

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It gets better! Meanwhile hopefully the pictures can provide you a little bit of joy this season. I love you all!!!

16 month update

Hello!!
Can’t believe that it’s already been 16 months! 2014 has been an incredible year filled with lots of ups and downs.
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I’m doing well. Skin has finally seem to be very resistant- meaning stress, lifestyle change, or food choices don’t seem to affect it’s health. I just had my finals week and as a result sleep and food wasn’t too good but my skin persevered.

Above picture is after a warm shower. I am still doing moisturizer withdrawal since my skin doesn’t seem to need it. I get itchy here and there but nothing too disconcerting. Skin is very strong and most of the time it’s not even in my radar.

I’ll be going back to the sulfur spring since it seemed to help my skin. Again, if you feel you’ve hit a plateau in your healing I highly recommend the sulfur hot springs. I still have discoloration all over my body but I’m sure they will go away in time.

Life is good. I’ll be praying and hoping all of the tsw warriors reach this stage sooner rather than later. Stay strong everybody <3

birthday man

Today is a special day because my favorite human ages one more year!

When my “eczema” was getting worse and worse and I was lost and overwhelmed by my rapidly deteriorating health, my husband was the first one who supported me. Despite the fact we’ve only been dating for a few months, he was there 100% and supported my decision to start the withdrawal process which will put me (and us) in a world of struggle.

It was the beginning of a relationship- we were supposed to be in hormone filled euphoria. But due to TSW, there were some really hard times. I was chronically ill, and as a result, chronically sad. My self esteem plummeted, along with my desire and energy to do things in life. I used all the energy I had to attempt to seem happier to everybody else, and as a result, Rhys bore the brunt of my depression.

Despite all the hard times, our time together went by incredibly fast. I can’t believe it’s already the second birthday we are celebrating together. So many things have happened in the past year. In the beginning of TSW, I would often tell him that I wished I was put in a coma to sleep through all the pain and discomfort. 16 months in, I am so grateful I lived through every day of the past 16 months because for every low points, there were highest of highs I have had the honor to experience. We have traveled to new places, tried new food, learned so much about each other, and fell deeper in love. From surprise weddings to starting school again, my husband has blessed me with his kindness and silliness.

So, happy birthday to my best friend and the love of my life! You have brought so much joy and light into my darkest times. You are my rock that grounds me and I am beyond thankful to have you by my side. I love you )( much! (/mush)

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Almost finals week- feeling good!

I’ve been insanely busy but a quick update! I’ll do a thorough one soon!

I’m doing very well. Over thanksgiving break I went to a sulfur hot springs and it was amazing for me!! So if any of you feel you’re hitting a plateau in healing, try it out. Lmk if you are interested in which one I went to.

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Face today. Arms below from right after hot springs.

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It seems neck down is mostly healed – I soaked in hot springs for hours and my skin ate it up! Afterwards it’s been clear like it hasn’t been in a long time. Neck up was dry and irritated but few days ago something clicked and my face started to feel oily again. I am not using any moisturizers again- so that picture is all me! It’s amazing how far my body has come. Just keep trekking everybody!

Happy healing warriors!

Month 14 and 15 update

Hello!
I hope everyone is doing well. I feel like I have finally moved on with my life. Doing school, taking too many units, all right up my alley. That said, skin isn’t at 100% yet and I am sorry to say I am on my third flare. It’s definitely not as bad as first two times. Weather have turned very dry here as of 11/1 which is definitely not helping. My legs have started to act up, and I have a bit of wound in back of my leg which is painful. However, as usual, I get plenty of sleep all the time (~8hrs)

Unfortunately the flare started from 10/20. Itchy nights and a bit of oozing. Thankfully, by 10/23 it’s settled down. I’m no longer itchy but am flaking a bit more as I usually do when I recover from a flare.

However, on 10/29 I had,to go to the ER for severe abdominal pain, and my skin usually follows suit when other parts aren’t doing well. Then the weather turned dry and I’ve been inflamed and itchy. My face, scalp, neck, back of my knees and elbow flexure are the affected areas.

I’ve been shedding more and my neck sometimes gets oozy, which everyone knows it’s the worst. That said, I am not super itchy, and the skin itself is still pretty strong. I am still not using any moisturizer, and on good days you can’t even tell that I am not.

Since 11/3, I’ve started eating no dairy and gluten again. We shall see if it helps! Despite the flare, I’ve been leading a basically normal life, but I’m really hoping the flare will subside soon!

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Above were all taken 11/9

11/4
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Some photos from month 14, when I was doing better.
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So as you can see, my face alternates from looking mostly normal to dry and irritated.

That is it for now, sorry about the delay! Stay strong everybody, and always, if you have any questions, let me know.

Month 13 update

Silly me.

I decided ah wtf I’ve been bad with my diet and while my skin has been getting steadily worse, it didn’t completely freak out on me, let’s just enjoy this souvlaki with bread. The gluten full kind.

Oops.

I had deep itch return all over my body. Nothing as bad as beginning and nothing strong Tulsi tea didn’t get rid of. Then I woke up and my face and neck was super dry and flaky. Worst I’ve seen in months! Then being the stupid girl I am I did it again that night, complete w msg and high sodium. It was very delicious, but the next morning I suffered the same results. I stopped for a day and I’m better! Coincidence? I think not, especially because I had night shades and dairy yesterday. I think dairy with nightshades gives me acid reflux and nausea but that’s whole another thing.

I’m back in LA now, and off gluten for few days and my skin return back to normal. It seems as long as I’m off gluten strictly, and very minimal nightshades and dairy, I’m good to go skin wise. It doesn’t look 100% normal, but I’m sure moisturizing will help with the appearance. Three months ago, I went on the plane to Melbourne semi-terrified for my skin. Now, I went on the plane ride without any worry! Success! While the trip did dry me out and I flaked it off the following day, I feel great! Skin is a non issue for me (living wise) and I’m excited to start my life again. While I look forward to the day the skin will look completely normal, for now I am so grateful I’ve healed enough to go back to normal life.

I’ve become a big believer in power of food. It can destroy, but it also can build you up and breath new life into seemingly hopeless situation. This journey have taught me so much about myself and who I would like to become. More specifically, I realized what kind of doctors are sorely needed in this world, and I’d ultimately like to fulfill that gap.

If you are only just starting topical steroid withdrawal, welcome to the community, and best of luck to you. While some heal without any dietary changes, I believe for others it is crucial for their recovery. Consume highly nutritious foods, and they will help you. While flares are inevitable, I believe diet changes can help avoid the flares caused by irritating food. As everyone is built differently, I do not want to make a blanket statement, but I’m sure we can all agree cutting it processed food can only do you good. It’s up to you to figure out how intense you want to be with your diet – I definitely understand how emotionally healing a slice of pizza or cone of ice cream can be. Hell, when I first started my autoimmune paleo protocol, I uttered word for word, “but food is my only source of happiness!” However, once I was two weeks into it, I realized not only have I found other sources of happiness, I was able to find happiness from these healing, delicious food as well. It takes more creativity, but once you’re into it, is really not that bad. The greatest reward for me is seeing myself heal and realizing I am unlocking the key to my optimal health.

Pictures will surely follow, my phone is dead and so is my cord. As I start school again, I’ll become pretty busy, but I’ll try to update every month! Have hope and I wish you strength TSW warriors.

HAPPY ONE YEAR TO ME!

Holy crap! It’s been a whole year already! I must say, time went by much faster than I expected. But then again, that’s just looking back. In the midst of the pain, it was as if time had stopped still.

Unfortunately, I am still not healed. However, I am doing much much much better! Upon scrolling through my blog, I can’t believe how far I have come the past year. It has been a hell of a ride, physically, mentally, and emotionally.

I guess I can’t complain too much, as I have had a better withdrawal than some I’ve seen. I didn’t suffer too much from swelling of the body (just my face), my hands and feet stayed clear the whole time, and I slept relatively well throughout it all. Considering my cumulative usage is ~20yrs (although I only really used it for about 10 yrs, and except for last 2-3yrs it was very sporadic), I am doing much better than expected. I attribute the following for my better-than-expected-withdrawal:

1. Stress free recovery.
I was hugely blessed to be able to just focus on getting better for a year. I feel so lucky I was able to do that. I was able to sleep whenever and however long I can/wanted, which I believe helped immensely. There were no external stress, which I know helped as stress definitely worsens things for me.

2. Korean Traditional Medicine
About two months in I took Traditional herbal medicine for few months. It was supposed to aid in overall wellness, with focus on drawing out the heat and support my liver function. When I seemingly didn’t improve after the first round, he took out all the “tasty” thing that may be more pro-inflammatory and made it more hardcore and really nasty. While my skin didn’t improve by leaps and bounds, I think it helped me function as a whole. I didn’t suffer too much from insomnia and the nerve pain went away relatively quick.

3. Moisturiser withdrawal
I stopped using all forms of moisturizer about a month or two into it. I started before there were all the controversies on Itsan about it, mainly due to laziness. I hated water and if I moisturized, I’d have to shower or bath longer to wash off the old goop. So I stopped. When I did, I stopped getting blister clusters and the itch was reduced. My oils started to come back and my skin felt less uncomfortable. I’m still not using any moisturizers and I would say my skin is now more naturally moisturized than pre-TSW when I still had “normal” skin.

4. Autoimmune protocol / autoimmune paleo
I only started this diet about two months ago. You can read more about my experience here, but basically it’s a pretty restrictive diet that’s meant to heal your gut and help relieve any issues that stemmed from it. For me, the difference before and after starting the diet was huge. Once I started to haphazardly reintroduce food, my skin got worse. I went back on it, it got better. Not to mention, my bowel movement improved a lot.

Edit: I have been bad about diet because I’ve been meeting up w people and eating out. I definitely see difference in skin- drier and itchier. I stopped eating chocolate everyday and it’s on the mend again.

5. Supplements & Tea
I drank rooibos tea like water for the first half of TSW. It’s anti inflammatory and I think it helped. I recently started to take Tulsi tea which has helped a lot as well. I highly recommend the two tea. I’ve been bad about supplements. I’m a bad patient. But I’ve taken fridge- probiotics regularly and I think it’s been helping me. I also take fish oil on and off because I have my doubts whether it helps or makes me itchier. Asians are supposed to be better at using vitamin D so maybe I don’t have a vitamin D insufficiency after all.

I hope these can help you in your Topical Steroid Withdrawal. I’ve been doing so well now that skin is steadily becoming an afterthought. I dress however I want (it helps it’s winter!) and go out with friends till late at night without worries. My energy is almost all back which has been amazing.

Now come the pictures (which is what you wanted to see aha)

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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!