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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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.

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!

Sex and intimacy with topical steroid withdrawal

Ok humans, it’s going to be rated r to x kind of post so you have been warned.

Second warning. It will mostly likely include explicit details.

Final warning! There’s no turning back now!

Continue reading

What NOT to do when your friend is engaged

This post has nothing to do with TSW. It’s about my engagement. I’m the first out of my group of friends to get engaged. I don’t know if it’s because they’ve never dealt with an engaged friend before or what but some of them could be… More tactful about some things. I thought it was common knowledge but I guess reminders can’t hurt.

If your friend is engaged:
1. Don’t declare the cost of The Ring. (I mean really?!)
2. Don’t comment on whether your friend should’ve spent more/less on The Ring.
3. Don’t ask about the cost of said Ring. (Even with daily items it’s considered rude at times so…)
4. Don’t ask if it’s “real” (no it’s a hologram)
4.1. Don’t ask about the stone really at all really (size, color, etc) unless you’re pre-engaged and is looking for practical advice. And even then, proceed with caution.

You may think, “what’s the big deal? I’m just curious/what have you” The big deal is these informations are none of your business and your sole job as loving friend is be happy for the couple and comment the ring is pretty if you think it is (no need to lie). That’s it. Whatever reasons the engaged may find these questions distasteful, aside from just plain violation of manners, is not for you to figure out. So don’t try to do that either and wonder about the underlying issues the couple may have about the ring just because they seem displease to answer your probing questions.

Me and my fiancé are both pretty easy going and I love my ring and think it’s the prettiest thing ever. So the questions, though unwanted, hasn’t phased us. That said, spare others the grief and take these don’ts to heart, please. Your future engaged friends thank you. And if they want to discuss these things, let them bring it up first. Don’t be rude and be that person. Let’s focus on the fact that the ring symbolizes a lifetime of commitment. That alone is plenty precious. Mmmkay?? Ok.

End rant.

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.

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.

I’m thankful for TSW!

Whaaat?! I’m thankful for the disease that made me drop out of school and be boring and stuck on the bed?? The same disease that wakes me up at night in itch fit and worry everytime I attempt to leave the bed??

Yes. Well kind of.

I’m thankful for the free time (too much really) that TSW has afforded me to think and reflect about my life and my values. I’m thankful for the chance to live out certain principles- true beauty lies within, relying on Christ, don’t be vain.
I’m thankful for my friends who have supported me, without doubt or questioning. I’m thankful for their belief in me.
I’m thankful it reminded me of friends who may be far in distance but still hold me close in their heart.
I’m thankful to be engaged to a guy who I know will believe and support me through thick and thin. I’m thankful for his reminders of how he loves me and somehow still finds me beautiful.
I’m thankful for my family, especially my mom. She does everything for me and surprises me everyday with her sacrificial love. I’m thankful for my dad and sister’s antics that brings smile to my face.

Lastly, I’m thankful for all the blog readers! I’m thankful TSW has connected me to lots of amazing, super strong people who are on the same path of healing. Happy thanksgiving to everybody and I hope it is filled with love and joy!

Heart type things

There is nothing quite like lying awake from 2-8am that makes you feel like a nocturnal creature. A moody nocturnal creature.

This week has already had its share of great highs and lows, and its only Tuesday morning. If the rest of the week proves to be this excellent an emotional roller coaster, magic mountain would be proud, and I’m not sure I’ll get through it without hurling.

When you decide to love someone, in any capacity, you are essentially handing them your heart, trusting that although they can drop it, and shattering it in the process, they won’t. But people do- friends, lovers, family, ourselves even!  -over and over again. Since the heart itself cannot be reinforced to prevent intentional, and unintentional breaking, you put it in a box. Then another, and another, each box increasing in its strength and durability. If you’re not careful, soon your heart will resemble a Russian nesting doll made of excuses and hurt- so much so that your heart can become very hard to relocate, buried underneath all this crap. You do this to guard and protect that fragile thing because whether the broken heart manifested itself in a dull physical ache that you can’t seem to alleviate, or a sleepless night spent making your pillow a tear rag, it hurts. And human beings, well, we are designed to run as far away from pain as possible. So box, upon a box, upon a box. Masking tape, duct tape, writings on the boxes that read, “do not open, remember last time?!!!”

But something compels us. Time passes, memories fade, you meet somebody new and layer by layer, you start opening the boxes. “She seems so genuine, he seems so kind.” Another layer, gone, and so on until you see that heart, finally. Then you hand it to them again, knowing full well, the risks. Or so we think – if we actually remembered all the gory, depressing details of a heart break, who among us would be brave enough to try, and try again? I’d like to think I’ll be brave (or stupid, feel free to use whatever description) but I’m not so sure anymore.

The thing is though, why do we even get so broken in the first place? Is it perhaps we place so much of our hearts in their very human hands? If the center is tightly bound to something that does change, shouldn’t we be able to save ourselves from the most debilitating, must-lock-and-seal-my-heart-away kind of pain because large chunks of the heart was occupied by something other than fickle humans?

So in the depth of sadness may my heart learn to say, “Restore unto me, the joy of thy salvation”

Meaninglessness

I was always the busy one. The one who was taking way too many classes, involved in multiple extracurricular activities, who slept too little (which, let’s be honest, I probably could’ve avoided that majority of the times by becoming more organized with my time), and stressed out too much. And yet I always compared myself to those who were still doing more than me, frequently feeling inadequate. At the same time, however, I relished in the knowledge that I was involved, busy, doing stuff. All the things I was involved with gave me meaning. It gave me a sense of purpose. It shaped my identity.

I loved it when people asked me how I did all the things I was doing. I loved knowing that I was going somewhere in life. If that makes me sound like a dick, then it’s because I was one. Sure, I didn’t let others know how I felt, because it makes me seem like a terrible person, but deep inside, it was how I felt.

Lately, I don’t do much. I’m basically unemployed with very little responsibility. It is really nice, in a way. However, the lack of activities have me feeling lost. I feel like a failure knowing everybody else is moving forward while I am left behind. Life is on survival mode, I live one day at a time. Life is on pause for me.

Today, the boy told me that he was learning to operate on a pig for his research. He is being a rock star scientist and I am so happy and proud of him. Right after the text, I finally figured out how to knit the purl stitch and became ecstatic. It was kind of sad and pathetic. I took my victory, though, because I’ll take whatever I can get! The point is, knitting is really meaningless and kind of pointless. And so I need to learn to find my meaning and identity that is separate from all the stuff I am doing (or not) and how busy I am (or not), lest I am left in a pool of sadness and existential crisis

I am hoping as I continue on this journey, I will learn to be at peace when I feel like an unproductive, incompetent member of society, because all the stuff I do… in the end that’s not what I should derive my meaning from. I mean, be busy, and productive, and all, but I’m hoping I will get distance I need to separate my worth from the busyness of it all when it is time for me to go back to school. Understand I am worthy regardless of how much stuff I am doing or not doing.

Now, It’s back to knitting for me! (Can I just say I got really good at it in the last twenty four hours? Woo go me!)