Wednesday, July 31, 2013

red and burning today photo update

raw skin was super oozy and painful today. 

photo is washed out a bit. but my rash goes all the way to right before my hair line. 

Those undies are supposed to be skin colored for reference. Ick. 

Hoping for better days. 

Tuesday, July 30, 2013

I went to a wedding!

Well, this is different.

Since TSW began I've pretty much been a shut in as much as possible. Buckling down at my computer with my water by one hand and mouse in the other, I just play hours of video games and watch TV and movies until my eyes are dry and red.

This past weekend was a wedding and as some of you may know, leading up to it, I was very anxious about how I would fare both physically and mentally at a long social event. Most of the socializing I've done has been limited to hanging out with coworkers an hour or two after work then going straight home to tear off my clothes. But here, I'd be held captive for a whole ceremony + reception.

In advance, I vetted my costume very carefully. It had to cover all my messed up skin, besides my face, and it had to be comfortable. Initially, I found a turtle neck long sleeve dress with open shoulders. My worst spot at this point was my neck and I figured if the rest of my skin was covered up besides my shoulders I could moisturize those babies and it'd be fine. Right?

Wrong. Fast forward one month and my shoulders are scratched to bits and my knees are now exhibiting elephant skin. What's a girl to do?? Well, go shopping of course. Luckily, I stumbled across a turtle neck midi length dress from ASOS. Only 13 bucks was a great investment for a classic dress that I could wear out on occasion. I chose charcoal gray because if any flaking occured, it'd blend into the texture.

Yay, my outfit was set. Now for the makeup. My skin was oozing a couple days before and I was a little worried that I'd be oozing all over during the wedding. That morning (or afternoon more like) I got in the shower 3 hours before I had to go to the event and then started to pat dry my face and apply my vaseline and cetaphil moisturizer, then zinc oxide on top to make sure any spots were wicked away. 

My face was a bit flaky that day so my choice to use a cream compact was probably a bit misguided. I used Chanel's vitalumiere compact and immediately I could tell it was the wrong choice b/c my skin dried down immediately and I looked a bit cakey. No matter, I popped on my eyebrows, eyeliners and falsies and off I went.

Only #selfie I took. I know, I look like I'm going to a funeral. But really, I'm headed to a summer wedding :D Forgot to take an upclose of the face but forehead was a little flaky. At least HFFA? lol. 

For day, I doubled up on ibuprofen and tylenol, which I warn shouldn't be done often and especially shouldn't be done if you plan to drink. My evening would be dry except for the toast where I sipped a few teaspoons of champagne. I took 400mg ibuprofen and 1000mg tylenol every 4 hrs and it kept my itch away.

I also had to take a break half way through in the bathroom and strip off my dress and shake the flakes off. The avalanche left a film of my skin over everything and when I went grab some toilet paper, it created a little cloud of skin in the air. Lovely.

One awkward moment was when I was chatting it up with some of the grooms friends, one commented that I looked cold because my sleeves were pulled up to my knuckles. "Are you a shy person?" I suppose, but really, it's TSW!

It was a beautiful ceremony and reception. The bride and groom wrote their own vows to each other and their day of celebration was really touching. There were tears shed during the ceremony and reception and it left everyone feeling warm and fuzzy inside. For the moment I was able to forget about my suffering and enjoy the present company which was nice.

Our table's centerpiece

A kid warming up the dance floor

Finally, I'll leave you with these pics where you can kind of see my face. My expressions are a little muted b/c my skin is tight but I was glad I looked okay for these goofy pictures.

Photobooth! My friend's face is altered for his privacy. 

It was definitely worth it to get out and about for the day and enjoy company and good food, away from my dark skin filled room. If you're able to escape it for just a moment, you should. Though the next day I was super flaky and itchy, I just thought back to the previous day and how great it was to hang out with friends. 

Tuesday, July 23, 2013

The worst state to date, spreading, red spots, weeping and pain: July23, 2013

I'm officially starting month 3 for almost a week now and I can't say I'm doing well.

After catching a handful of good nights sleep, my sleep has gone back to being disturbed 1-2 hours in with intense itch fits. Now my skin is really hurting, with hot spots being my chest and elbow creases. 

TSW skin has spread to the creases of my knees and a little in the creases of my groin, and most of the affected areas now have little red dots all over. My face is raw and weeping. Lymph nodes all over my neck are swollen and hard.

Red face today, oozing upper lip and chin with zinc oxide already applied. Neck and chest red and spotty.

I'm taking ibuprofen constantly now to ease the pain. It helped immensely the first few days of using it but by now the itch is breaking through and I feel like my skin is constantly crawling. 

ON THE BRIGHT SIDE, I've found some amazing shirts for covering my arms in the summer. These are Delia*s tissue tees that come with thumb holes! I bought one in almost every color and they can be found here: for reference, I'm between a small and medium for misses and a small works great for me. The fabric is lightweight and kinda stretchy so the sizing is somewhat forgiving. And I layer them over basic tanks from forever 21:

Since my knees are now afflicted, I'm trying out workout leggings for my bottoms. Seems comfortable so far.

Nope I don't look as happy as these models but this works best for my TSW uniform, preventing me from scratching up my sleeves during the work day. Got one in every color!

Back of hand is no bueno. Elephant skin and red dots galore. 

Chillin' at work with my short nails and long sleeves!

Hope all you TSWers out there are faring better than I! Just gotta keep reminding ourselves of the finish line, whenever that may be. 

Wednesday, July 17, 2013

2 month update. Not what I was hoping to write about.

Welp, 2 months down.... ????? to go...

Right now, it doesn't feel like I'm progressing necessarily. Was hoping to write a more upbeat post for this anniversary but since I had a horrible night's sleep last night and woke up in so much skin pain that I called into work for a sick day, that will have to wait until I'm more up for it. Almost wanted to postpone this post BUT it is an anniversary so I will document what's going on.

As of today,  this is what's up:

Face: Cheeks, nose, forehead dry and shedding. chin and upper lip raw. chin gashy with wound like appearance.

Torso: Especially red around hands and elbows where I itch the most. Chest is intensely itchy, appearing red except for when I scratch and it turns white in my finger's path. Back is "normal" color but itchy and sheddy. Stomach is pink and shedding, itching only at night.

Limbs:  Arm sleeves are pinkish, swollen. Legs still appear mostly unaffected except for dry scaly skin on back of knees and itchy red splotchy inner thighs were they touch when I sleep.

Sleep: Same story every day, sleep 1-2 hours and pop awake. Stay awake approx 1-2 hours until I can't keep my eyes open and sleep another 4-5 hours. Feel groggy all day err' day.

Washing: Back to showering. Using cetaphil skin cleanser first all over before I step in to "protect skin" then rubbing all over to shed loose skin. Vaseline out of the shower after hyaluronic acid for skin parts that feel most strong, such as forehead, nose, back, upper arms.

Other: Mood is somewhat stabilized, as I have accepted my fate for the most part. Just going through the motions from day to day and trying to feel positive on days where I have less redness and weeping. Still feeling chills throughout skin when I see something that "scares me" like a yellow light, almost dropping something, feeling stressed. It died down for the last 2 weeks but yesterday and especially today I was feeling nerves strongly.

My current faves: Vaseline, even though it applies hot, keeps the most moisture on my skin. Zinc oxide + Allegra cooling relief mixed together on my weepy spots keeps them dry and cool.

That's all for now, as I feel like a robot today so please excuse my super dry post (har har, pun not intended). Hope you all are doing better than me today.

Thursday, July 11, 2013

the last 3 days: my red face progress pix

that's a movie title right? well i thought it fitting bc the last 3 days my face has really started to turn red and swollen and im worried for the worst.

i stopped wearing foundation to work this week because i figured they should see why I've been struggling to sleep and looking uncomfortable. and boy did it show. i woke up Tuesday with a very swollen face. i could feel my eyelids everytime i blinked which was definitely something new. i had seen it described on the ITSAN forums of other TSW sufferers but hoped my face wouldn't take the brunt of the RSS despite my heavy topical steroid usage on my upper lip, cheeks and chin. 

well, au contraire my body said and finally started to swell my face. today, my upper lip was so raw that the oozing continued all day and by the end of my work day the yellow crystals of ooze had formed. 

my 3 day progression. first day, swollen and red especially around the eyes resulting in those dimples in the cheeks, second day super dry especially lips, 3rd day raw oozing upper lip and lips with red plastic skin on cheeks. note the difference in color of the lips. my lips only get that red when I'm ridiculously dehydrated!

it feels worse in the darker light of the office and i could tell my condition was now evident as one coworker commented i looked like i was allergic to something and another asked me how my skin was doing. well, not great, i would reply uncomfortably. 

i feel like I'm in a constant hunch now because i am afraid if i stand up straight my skin will crack into a million pieces. haven't done yoga in over a week now but i feel like i should because the tension in my body is definitely mounting. 

in all hopefulness, i will wake up tomorrow less red and swollen but one can't ever predict the withdrawing skin's behavior. i can only hope for a decent night sleep and look forward to a weekend of rest and relaxation. 

with that i bid all the TSWers out there sweet dreams, at least some dreams for the time we remain asleep! 

Monday, July 8, 2013

Screw that, back to bathing. Progress post July 8, 2013

Ok, my no shower challenge was very short lived. By the 3rd day, my skin was so icky feeling (perhaps from the cetaphil) that I was rolling a ton of dead skin off in these rubbery rolls and still itching like crazy.
Luckily, I moved into a house with a clean bathtub and since then I've been taking baths about every one to one and a half days.

For the time being, I have been bathing with Aveeno's colloidal oatmeal packets and it seems soothing enough, but I have yet to try other additives. I also use Free & Clear shampoo and conditioner in the bath, try to rub off all my dead skin at the end of my soak and then rinse off briefly at the end.

My skin seems slightly calmer and less red, though the itch is not any less. My face and arms have not been too red but they are still swollen (to a layman they say it looks "normal" but the skin is elephant-like and rough) and my back just looks very spotty but normal colored. My tummy is the only place that is still very red and hivey.

On the one hand it's good b/c outwardly I look ok. On the otherhand, people look at me and say, Oh, you look way better! but in fact I feel just like crawling out of my skin just as much.

I've also discovered Gold Bond Itch Relief which is a godsend right before bed. I slather it on the back of my neck mixed with Zinc Oxide and any other itchy spots and the cooling sensation lasts for just long enough as I drift off to sleep. The unfortunate part is when it wears off and I have to slather it on again and again while I'm awake.

My sleep pattern has not improved much either. Like clockwork, no matter when I sleep, I can only get about 2-3 hours of sleep before I pop up in an itch fest. These days I try to wake up all the way and walk around so that I don't tear myself apart. In conjunction with the Gold Bond, it seems to be helping me get back to sleep faster. I still wake up with torn skin unfortunately but it seems like less than when I first started this TSW journey.

Along with the lack of sleep is my extreme irritability and emotional instability. I lost it a couple times already when a friend joked with me and it just hit a nerve and I broke down into tears. I finally arrive at the fact that I'm sleep deprived and such but at that point I already scared him off. I am almost thinking that being a shut in is better than trying to force my social interactions. Definitely still trying to find a balance.

All in all, I've almost accepted this as my current way of life. I try and occupy my time with things other than focusing on my skin such as computer games, TV shows and the occasional video yoga session. I've already replaced my wardrobe with TSW friendly clothing and all my makeup is packed away except for my bare minimum for workdays but that is a post for another day...