i do not know how to begin this entry when there’re so many thoughts in my mind.
i’ve just went through another week of crazy skin changes, just 5 days ago it was a little oozy all over, skin just falls off me in the shower, leaving me raw for an entire day afterwards, and don’t get me started on the moisture i feel when i lie down in bed. it feels too cold if i don’t cocoon myself in my blanket, but it feels so hot, moist, and itchy (especially around joints) once i feel that the temperature is right. waking up 10 times a night to scratch, only to have my newly formed skin rub off me like rubber dust, and then regretting the next moment because now my arms are raw and moist too. and shit, did i scratch my neck and back too? holy crap, now i’m going to wet my bed for real. and waking up to that oddly familiar stench (from the seeping bodily fluids) really isn’t the best way to start my morning.
but things change fast, really fast. while it felt like it lasted a life time when i’m actually in the moment, it actually only lasted 3 days. actually, 2 days, and the 3rd day it was already getting better. by now, there isn’t any more oozing. my skin still sheds, but i don’t have raw skin waiting for me.
i probably chanted “it’s all a process, it’ll be over soon” a thousand times during those 2 nights. it’s usually most unbearable at night, feeling hot and bothered (literally) for the wrong reason hahahaha!
i sat myself down today to write about some thoughts that have been running through my mind lately, since i’m feeling much better now. at least my mind is in the right space.
first thing first, i started this blog to document my progress for my own reference. somewhere along the way, some people decided to join me on my journey and watch the process unfold.
i still document for myself, but sometimes i find the need to answer to everyone else who’re looking up to me as the hope and light they need to see themselves through their very own TSW journey. i don’t see that as a burden. that’s something i take pride in doing – lifting you guys when you all need a helping hand, a guiding star in the darkest nights, an anchor in the stormy sea.. you get the drift.
i enjoy being able to reassure others that they’ll heal, because that was probably the only sliver of hope that kept me going back then when information on TSW was so scarce. there wasn’t even that many scientific journal that documented the healing from TSA/TSW. it’s difficult to stay grounded when there is so little proof, but i chose to believe in it anyway. dr rapaport and dr fukaya were two pivotal person in my TSW journey. even though i didn’t get their direct support, they were my anchor, and i believed and stuck through it even when people around me didn’t really believed in what i was doing.
if not for them, i would have lived with the idea that i’ll have to live with bad skin forever. FOREVER. that is a very miserable state of mind. i’m so glad i wasn’t in that place.
going through TSW wasn’t easy when i have to convince people why i will never use topical steroids again. going against the convention almost made me a crazy person. which was why i shut myself away from those friends who question my choice.
i would have felt very very alone if not for the ITSAN forum. being able to connect with other skin friends reminded me that i’m not in this alone. i’m not fighting an unknown cause alone. and i’m not crazy for doing something radical, because there are others who believe in the same thing as i do. i haven’t been in the forum for a really long time, but i never forget the first few skin friends i made there when the forum was new and small. they provided me with tremendous support that not even my friends can give me. it really takes one to know one.
i used to get offended when people question my choice, because they make me feel like i made a decision without thinking thrice. my self-defense mode is switched on automatically and i’m ready to fire. if not for TSW making me so sick of explaining my stand, i’d probably lost a lot more friends than i can imagine.
thinking back, they have every reason to cast their doubt on me, because i did make the stupid decision of applying topical steroids for 8 years, all over my body. and they probably meant well, right? there’s really no point in choosing to see the situation in a negative light, because it’s only hurting no one but me.
even though i know their well intentions, i still feel a pinch when they doubt me. it’s just like.. the following optical illusion.
you know the lines are the same length, but you still can’t help but see (a) as the one with the longer line!
i am fully aware of what kind of responses i’ll get when i share news of my latest flare ups, especially my month 48 update with my incredibly swollen face. while most of y’all are supportive and encouraging (thank you SO SO SO FUCKING MUCH, you guys shine like the brightest star in my sky 😀 ), there’s always going to be some concerned souls who will raise some skepticism against my thoughts and beliefs.
nothing new, isn’t it? it’s me against the world all over again.
just that this time, i’m more alone than before because i’m no longer believing in the same things that most do (that i should just sit here and do nothing about my skin because this is TSW and not eczema). the idea that what i’m experiencing isn’t TSW is shocking to some, and hard to stomach for many.
i thought of escaping and not updating my blog for a while, until i’m healed again. i thought of hiding and not replying to any comments. i thought of fighting this alone until i have results to prove that my hypothesis is correct.
but i realize that’s not going to help anyone. and hiding isn’t going to solve any problem. it’s probably a lesson that i need to deal with in life, because there will always be people who will challenge your belief. it’s not a bad thing even if it hurts a little, especially during a time when i’m more vulnerable than ever. it forces me to think in a different way, to re-evaluate my choices and decisions. in a sense, it actually helps me come to a better decision because everyone has blind spots, and it takes a person from another perspective to point that out to me.
if i can get myself out of my shell to face it, i think i can face any other opposing thoughts in the future.
so skeptics, thank you for bringing up thoughts that haven’t hit me. thanks for helping me see a fuller picture. BUT, please be gentle with me as you point out my blind spots, because it still pinches me 😛
and to my lovely skin friends who have been nothing but supportive, constantly telling me how inspirational and strong i am, thank you for giving me the affirmation i need to keep going. i appreciate every little nice support i can get because you all know how precious they are when you’re doing something that don’t garner lots of support. scarcity makes thing more valuable 🙂 law of economics!
as for me, i’ll continue to trek this path that most don’t agree with to explore new territory. it takes a lunatic to do something unconventional, something against the flow. but it’s even more stupid if i keep repeating the same thing (of doing nothing) and expecting a different result.
you know what, maybe i’m not fighting alone after all. it just feels like that because i focused too much on the tiny skeptical voices, and failed to realize the louder supportive voices. time to refocus my attention 🙂