i can’t stress this enough, family support (or whatever kind of support you can get) was the most important thing throughout my entire TSW journey.
there was nothing that can speed up the healing, but there are definitely things that can be done to ease the process.
for me, the biggest comfort came from my family.
my mother playing the most important role for the past 2 odd years (i mean, she has played the most important role throughout my entire life, but it wasn’t until TSW struck me that i realize how important she is to me), also my little brother (he deserves the best brother award too), my dad, and the rest of my family.
this feels a little like giving a thank you speech on stage after receiving the gift to live my life again.
“i just want to thank my mother, because without her, i wouldn’t be standing here today making this speech…”
yea, i probably would have died of hunger and depression if not for my mother.
[a tiny dark thought: i only stayed through because i know that if i let myself die, my family will be even sadder than they already are..]
i never expected her to be so easily convinced about what i am going to undertake.
when i told her i’m not going to use steroids anymore, she just accepted my suggestion.
i told her about dr rapaport’s paper and how he have helped thousands of people heal, she can’t understand english so there’s no way she can read his paper, but she believed me anyway.
she believed in me.
i am so thankful for that because sometimes, even i doubt my own judgement.
but she believed in me without a single doubt.
she also put herself in my shoes and defended me when others question my decision/actions.
i also want to thank all those who didn’t buy the entire TSW story because they totally made my mom seem like a gem.
and so i lived everyday surrounded by my mother’s love and care for me,
i felt like a baby again (minus the physical and emotional pain).
there’re not many who’re as lucky as me to have full support during TSW,
i feel sorry for those whose family are not convinced, and i hope that through this entry, you can somehow give it another shot at convincing them in believing that what you’re doing is the right thing.
TSW affects more than you and i.
it affects everyone who’re around us.
it’s a good idea to start educating your care givers to help them set realistic expectations too.
i actually spoke to my mom one evening before she slept [later on, i also asked my brother several of the questions to get his input].
i wanted to know how she saw the TSW from her point of view.
i have translated and transcribed our conversation so you can have a glimpse of TSW, from my mother’s point of view.
J = juliana
M = mommy
B = brother
J: how do you view this entire TSW thing?
J: WHOAAAAAA WHAT THE HELL IS THAT?
M: since this is already so, we’ll take it as it is. you’re the one who’re suffering, since i’m physically fine, of course it’s my responsibility to take care of you and all the other things. we have to face it, it will get better. it needs time.
B: i feel that it’s very irresponsible of the dermatologists, because they have neglected this symptom which have led to the sufferings of all the skin warriors. it’s also very unfair to their families, because i feel that no one (including their immediate family member) should be subjected to the consequences of the dermatologists’ negligence.
J: as an observer, did I heal gradually or was there an clear moment when i suddenly got much better?
M: it was gradual, there was close to no visible changes on a day to day basis. [my mom faced me everyday, that’s why she gave this response]
B: after i was back from taiwan, you suddenly looked so much better.
[my brother was in taiwan for 3 weeks. this emphasizes once again that significant improvements can only be observed if the observation time line is much longer, so please do not let the day to day observations faze you. you have to lengthen your observation period, instead of days, it should be a month at least.]
J: there are many parents who don’t believe in TSW, why did you believe in me?
M: i’ve seen it for myself! your skin only worsens despite seeing the derms for such a long period of time. if you need to rely on steroids in the long run, why not rely on your body’s own immune system? moreover, this is your choice. you are already way past the age to make decisions for yourself, it’s not up to your family to affect your decision. the derms said you need to use steroids forever, it wouldn’t matter if you can recover, but it only got worse! that’s why we can’t believe them! that’s why we have to believe that you will heal!
B: because i’ve had skin woes before and it was nothing like what you had. i feel that your cells have “mutated”. i also found out that you’ve applied steroids for too many years! i never knew that before your TSW, i thought you only applied it once in a while!
J: then are there anything in particular that really convinced you that what i have is TSW?
M: you are an undergraduate, you have your own capabilities to evaluate the entire situation. i believe in you.
J: but you saw that things didn’t improve at first. it was a year in and things aren’t looking better, won’t you suspect that i was wrong?
M: hmm.. nope. if you healed, it’s good. if you didn’t heal, then at least you know what kind of life you have to live.. i was already prepared to take care of you for life!
M: don’t you think so? haha! someone told me she wants her mother to take care of her forever, to stick to her mother for life!
J: *guilty laughter*
M: nothing is forever. i believe that you’ll heal. you have to give yourself confidence.
J: i’m still curious. why did you believe?
M: well, alot of people already healed, there are case studies from the doctor.
J: is it because i told you about dr rapaport and his paper? that’s why you believed me?
M: yes..! nothing is permanent. you have to be confident that you’ll heal.
J: are there any advice you’d like to give to other’s parents/care takers?
M: tell them that they need to have a little more patience. you know, your son and daughter didn’t want to get in this kind of situation too, if they continue to give them more pressure then it makes it harder for them to heal. their mood will become worse, on top of their volatile emotions. if you don’t stand on their side, then things are only going to get worse.
J: i understand how parents think, they just don’t want to see their child suffer.. and to see them suffer for this long..
M: this.. well you have to be mentally prepared. it’s not going to take just 1 or 2 days. my friend did tell me that it’ll take at least 1 year. she studied chinese medicine and she said it takes at least 1 year, but she also said you’ll recover. so there’s no need to worry. you have to be positive no matter what! it’s better to be optimistic!
J: yes you’re right!
M: if your mood is bad, how are you going to get better? “tomorrow will be better”, you gotta believe in that.
J: looking back at the past 2 odd years, what was the toughest thing for you? is it to cook for me despite having to work, or is it to help me clean my room, basically to rely on you all the time?
M: oh.. all these are small matters. all these are not tough. seeing you suffer is tougher. seeing you suffer… *voice trails off*
J: *sniff sniff*
J: now that it’s over, do you feel that it’s worth the while, after suffering for 2 years?
M: there isn’t something such as “worth it or not”, it’s good that you’re healed.
J: sill girl! why are you sobbing?
M: to see you happy again, to go out again, to see your friends again, to live life normal again.. that’s the best..
J: anything else you want to add on?
M: add on? i hope that parents can be very supportive of their child, don’t feel too stressed out because no one wants such things to happen. be understanding.
J: i know that back then there are moments which i didn’t handle too well, are there any advice for those going through TSW? like things you wished i didn’t do to you?
M: i think alot of people will hide in the room, like you..! always hiding in the dark, don’t even want to see one bit of light. and you always went to see other people’s discouraging accounts (she was referring to the japanese blogs i was reading through last time, boy it was really discouraging to see that they have not healed in 2 years). it’s better after you started watching dramas, watch those funny ones! when you’re free, you can write, encourage others.. do something constructive. it’s as easy as that.
M: it’s not that you can’t do anything at home. you can be like a friend of yours, work from home, or participate in the stock market [she was making things up]. as long as you’re not dwelling in the spiral of doom (she mean reading the sad encounters), the more you see the less hope you have. but it’s good that you can search for more information online. the most important thing is to be confident in yourself. once you decide on something, carry it out till the end. don’t think so much, don’t go back to steroids. once you give up half way, you’ll end up with nothing. no matter what, you’ll heal. you can’t carry anything out without confidence.
B: i know that you didn’t want to see (and be seen) by outsiders, so i stopped asking my friends to come over, but with my gf.. i hoped you were more understanding about her coming up. i didn’t want to go out dating and spending money, plus i was tired from army and all i want is to stay home to rest and spend time with her at the same time. [well, my brother did make efforts to minimize the chances of us seeing each other by residing into his bedroom most of the time so that i won’t see her in the common space, BUT I STILL LOATHE THAT IDEA OF POSSIBLY BEING SEEN NO MATTER WHAT.].
so that’s all i asked my family so far.
it wasn’t something planned. i was just talking to my mom before she sleep one night and i suddenly had this idea of sharing her POV with you guys, hoping that it can somehow convince one more person that TSW is true, and that quitting steroids is the right thing to do.
what’s better than letting a parent talk to another parent?
p.s. my mother went off track a little while answering my questions, i’ve actually filtered some of that out, but it still seems useful. it pertains to the washing of bed sheets and clothes. she said that it’s best to:
– soak in warm water and agitate (by stepping all over it) before washing to get rid of the tiny dust/skin that’s trapped in the sheets. she said that the water is murky.
– if warm water doesn’t do the job, use hot water to get rid of the oiliness (because i used vaseline.. tough to wash!)
– use dettol to get rid of the strange smell that emanates from the clothes. she says my clothes smell weird, i think it’s actually me that smells weird.
that’s all for my post today!
[almost went blind going through the chunk of text.. there’s something about this grey text that makes my eyes go @_@]
are there anything else you would like to ask them?