no no no i’m not pregnant! just thought it’d be funny to use that as the title.
this entry is meant to tell you what to expect during the course of TSW,
hopefully to prep those who just started on the journey, or are contemplating to embark on the journey.
i think i’ve mentioned this before, when i’ve decided to stop steroids for good, i never expected TSW to be THIS tortuous.
the paper written by dr rap was informative, but it wasn’t super detailed.
(on hindsight, perhaps it was a good idea to leave out the most gruesome symptoms so as to not scare those who are preparing to quit steroids.)
so this is my version and overview of what shit i’ve been through, and what you MIGHT go through.
i say “might” because everyone is different fundamentally, you may or may not have the same symptoms as me.
the warm up trek (month 1-4)
turning red and swelling up
one of the first symptoms that was out of the blue was the swelling of the face and legs. the spreading of the rashes were thought to be a case of my worsening eczema. the redness start to spread out all over my skin and soon i’m shedding like a snake. i felt miserable because i’ve always felt confident about my appearance, but now i look like i’m constantly sun burnt. very soon, my whole body was swollen (to a certain extent)
dry skin was an issue. they were so dry they can’t stretch properly. cracking was very normal. feels like having a thousand paper cuts.
temperature dysregulation was a big issue for me. singapore is sunny all year round, and under the 30 degrees celcius heat, i’m clad in a sweater and long pants but i do not perspire. when i’m in an air conditioned room, i will start to shiver despite my skin feeling really warm.
i think the correct description of how i felt was.. FEVERISH. i feel feverish ALL THE TIME! it doesn’t feel good at all.
started to lose sleep at night. sometimes i’ll get really tired in the morning though. i guess it has something to do with the cortisol levels in my body, but it’s just a speculation, since i can’t really determine and keep track of what’s going on inside my body.
there were some oozing, especially when my skin touches each other (such as my tummy folds, behind of my leg, and the inside of my arm). they dry upon contact with air, so i just have to make sure i sit up straight and spread my arms and legs. my legs however, oozed a little more than the body.
sore and swollen finger joints
is this arthritis!? it could be. i still haven’t find out what and why my joints on my fingers are swollen back then. they hurt a hell lot too, i feel like an old lady. good news is, they no longer hurt today. BUT i think my joints have been deformed (just a little) permanently. i used to have straight and slim fingers, now the joints are significantly wider than my finger. but it’s okay! i’m not some sort of hand model so it’s ok to not have long and slender fingers~ (self consoling statement)
i think mothers would have experienced this. hair falling out everytime you brush your hand through your tress. a rough estimate of the amount of hair i lost – one quarter of my original hair volume. it did stop for a while towards the end of the 4 months. my eyebrows that has thinned a little also grew back.
loss of sebum and perspiration
i’m quite sure it has got something to do with the dry skin. i won’t say the loss of sebum caused the dry skin. rather, something caused the dry skin and shut down my sebum factories. my scalp was so dry, there are skin flakes falling off my hair. i start to miss my oils. back then i find them to be stinky, but i’m totally embracing it now. perspiration operation ceased to a zero. i’m quite glad to be honest, i can’t imagine how bad the sweat will irritated my skin.
the amazingly gently sloped downhill (month 5-10)
gotta mention this first, because this little bugger is one of the most inconvenient things throughout the whole TSW. i call it the “bloody wound” not because it’s bloody, but because it’s bloody irritating. if i were to describe it, it’s more like an oozing wound. it looks like a wound that is infected (but it isn’t). it just keeps oozing a clear yellow fluid and it is bloody annoying because it stains my clothes, bed sheet and whatsoever that comes into contact with it. for many months i had to sleep with cotton pad stuck onto my body so that it would soak up the ooze. i also have to limit my position when i sleep so as to prevent staining the bed sheet.
something worth noting. it forms alot of vesicles underneath the skin. these wounds takes several months to heal. throughout the healing process, they will ooze, scab and peel and the process repeats. i gotta say i enjoy peeling off the scab and it was one of my entertainment during TSW. (thumbs up if you have itchy fingers like me)
the wounds were spread throughout parts of my body. my scalp had it, my face, my left shoulder, my right elbow, my right knee, my ankles, my foot, EVEN MY SOLE!
those days were plain miserable.
it’s an on going issue since the beginning, nothing much has changed. just that i was living in the united states time zone during this time. it means i’m sleeping during day time in singapore, and awake throughout the night.
voracious appetite and weight loss
for once i can eat like i’m dying tomorrow. if you are health conscious, please don’t do what i did. i was hungry 24/7, during my waking hours. i ate everything in sight – cake rolls, biscuits (my favourite is mcvities), bread, 2 servings of rice every meal, fruits, every thing i can find at home, i eat them ALL UP. funny thing is, i kept losing weight despite the high calorie diet i was taking. something must be wrong with my metabolism.
again!!! lost another quarter out of the remaining hair that i have. never been sadder, because i already had thin and flat hair to begin with. now it’s only getting thinner and flatter.
loss of sebum
the oils did come back for a while after the first 4 months, but they didn’t stay for long. 😦
i perspired a little during my 5th month, but it only lasted for about 2 weeks. after that my body was feverish again, and it marks the beginning of a no perspiration life for me.
i’m sure you’ve seen some of the photos before, my finger will be so swollen and inflammed, it oozes and peels. even my nail growth is affected by the inflammation. at one point in time there were ridges and grooves in my nails. not only that, my nails grows out to be yellow. i think some people with psoriasis on their hands might have experienced this (not due to TSW).
to be honest, i don’t feel like any of the symptoms i’ve experienced in the first few months has stopped during this period of time. therefore, you can assume that things have only gotten worse all over my body. i can’t really recall every bit by now, but yea, things only got worse.
random joint pains
is this what arthritis feel like? i remember my finger joint hurting quite alot. along with many other random places too.
HUGE lymph nodes
i thought i had beans in my body. i can feel the lymph nodes very prominently. no amount of lymph massage helps.
the plateau which is actually yet another gentle upward slope, but too gentle to be detected as a slope. (month 10-20)
things becomes a little different. the wounds will now scab every few days. that means it’s not oozing everyday anymore, perhaps only for the first day after the scab has “fallen off” (actually, i peeled them off. i can’t stop myself from doing so!!!). at least i know the skin is growing out.. my face was oozing yellow fluid, i wake up with yellow crystals on my face every morning. if only they were gold…
red and dry skin
skin throughout my body is dry and red. it feels slightly different from the first stage though. during the first stage, the dry skin is very superficial – white flakes coming off to reveal brand new skin everyday.. but now, the dry skin seems more deepset. i can see lines on my skin, if not, elephant skin. the skin is thick and rough. clear fluid will seep through my skin if i scratch it. on my hands where the inflammation is worse, the fluid is yellow.
they take turns to “rot”. that’s all i can say.
it’s an on going thing. hair is 1/3 the original volume by now. eyebrows are either broken or they fell out. eye lashes are growing strong though! but it doesn’t really matter.
the following might be TMI, but i think it’s significant to mention. my body hair and pubic hair became super fine during this period of time. i guess the hormones affected the hair follicles, it sort of make it go back to its pre-puberty stage. but it’s just my guess. it could be due to the swollen skin pushing and shrinking the hair follicles. i don’t know! it is also super easy to pull hair off my arm.
the attack of the sweat glands
it wasn’t pleasant. it seems like it’s in an overdrive or something like that. after i shower, i must dedicate at least an hour to cool off (i can’t shower in cold water because i just can’t tolerate it. i shower in warm water.), otherwise i’ll heat up and get into a sweaty and itchy mess. heat attacks can go on for half an hour and it is tormenting. it doesn’t help even if i sit right infront of my fan. i’ll just be scratching like a monkey.
i have alot of black spots popping up all over me. tried to find a reason for it, so.. i guess the constant scratching irritated my melonocytes..?
abnormal heart rate
i just got reminded about this one. i can’t remember when it started, but i first noticed it during this phase of my healing. my heartbeat would be about 120 per minute when i’m sitting down. it freaks me out, got me worrying if my blood vessels will be damaged due to the increased pressure. also afraid that my heart will be working overtime pumping faster than normal. i thought too much eventually. it went away on it’s own in the next phase.
it got a little bit more serious during this period of time. i remember my hip muscle/nerve was somewhat affected. i had to do so much stretching that targets the piriformis syndrome to seek temporal relief. there was also a pain in my right wrist, i thought it’s because i used my phone too much. turns not it’s not really related.
numbness in limbs
it happens when i sleep. i wasn’t even sleeping on my arm! it could be placed above my head and the next morning it’d be lifeless. i suppose the way my swollen skin folded had inhibited blood flow somehow. my entire leg will feel numb very easily too..
“good morning, hand. can you please wake up?”
the uphill (month 21 onwards)
red and dry skin
they have changed form again! skin is much more calmer than before, but there are still patches of redness. some of the fair and normal skin is coming back, albeit slowly. skin fall isn’t as scary as it used to be, but there is still a significant amount of dead skin cells every day. skin is generally smoother than before. elasticity has improved. i can skip my morning showers!
my red patches are very wide spread, they are places that used to have eczema rashes. actually, what i have right now sort of resembles my initial eczema. what i’m saying is, yes, this is eczema (based on the definition of skin being inflammed), but the cause of the eczema is the TSW.
sweat like you never before!
i always thought i was blessed to not perspire too much in the singapore weather.. looks like i was wrong, at least for now. i’ve never seen my sweat glands so active before. i no longer getting into heat attacks, but i can sweat profusely off my scalp and face. must have a packet of good quality tissue.
all of them have healed by now, albeit not completely. most of them are very mild, you can’t see them from the surface but you know there’s something going on underneath the skin because it still shed every day. it’s perfectly fine with me, as long as there’re no ooze!
this is something new. i guess the skin is still very sensitive. it goes away after a while!
small white vesicules
ON MY FACE. at first i thought i was reacting to the sunscreen i was wearing, turns out it’s not. it’s just part of the healing process. tried squeezing it thinking it was a white head, but it’s just some white fluid. squeezing it doesn’t help. i have since learnt my lesson!
the edema at the beginning did get much better, but i’m still more swollen than before TSW. that’s right, even when i’m 2 years into the journey. i thought i gained fats, but i suspect it’s a mixture of fats and subcutaneous fluids. drinking tea doesn’t help to purge those fluids, dr rap did mention in his papers that edema is expected. i didn’t expect it to stay for this long. oh man. got to assure myself that a puffy face can make me look more youthful since it’s not sagging. gotta be positive..!
bean like lymph node, joint pain and numbness in limbs
things did get better by now, but it’s still present. eventually they all disappeared though.
first edit: ok, i just want to roll out this entry ASAP, so alot of the things are not exhaustive. i’ll update again when i recall more things.
second edit (190813): i’ve added symptoms like.. swollen lymph node, joint pain, and numbness in limbs.