Saturday, August 16, 2014

TSW day 236 / MW day 28 - picture update

So I'm flaring like crazy. Last time I mentioned the nightshades and thought that was the cause of my flare that night. But now I realize that couldn't possibly be since I have been flaring every night since then. It's like nighttime hits and my skins decides to start weeping. Literally, dripping ooze. It smells and feels disgusting. I feel like a sticky, gooey mess. I've been waking up every day with swollen eyes and tons of gunk in them. My sheets get covered in ooze and have to be changed daily. Because of all this, I'm an emotional wreck right now. I don't understand how a person can sustain this kind of life, day after day of pain and discomfort. Even worse, I don't know how long my husband can deal with it. He is basically my lifeline. But that's alot to put on someone else's shoulders. He maintains a successful business, takes care of his ailing mother, takes care of our rambunctious 2 year old, and on top of it all, takes care of his sick wife. He is a fucking saint. As I write this, I'm crying. I don't want to do this anymore. It's only been around 7.5 months and I could potentially have another year or more to go. Jesus, help me.

I put on a brave face for all my friends. My family sees me break down though. Yesterday, 2 of my girlfriends came over with their kids so at least my kid could socialize a bit (he obviously doesn't get out much). One of them had a newborn and was of course super tired from being up all night with the baby. I made us all brunch and just that bit of exertion rendered me useless the rest of the day. I wanted to help her with her older child who also needed attention but every time she asked her mommy for something, I couldn't move. I have NO energy. And it's not from lack of sleep because thanks to my slew of medications, I'm able to sleep at night which alot of TSW sufferers are unable to do. But not only do I sleep at night, I sleep in the afternoon and sometimes in the evening too. I sleep SO much. Maybe you're thinking "well, all that sleep is making you more tired." No. There are days, though few and far in between, where I have energy and don't need to nap or sit motionless on the couch for hours. On those days, I'm able to do the dishes, laundry, cook dinner, change diapers, etc. I never know when these days will come and they seem to be coming less often. I feel like I'm getting worse. According to research, each flare/cycle is supposed to be less intense than the last one. This has never been the case for me. I have never had a break (a period of calm skin) like others have had. I'm starting to see other cases like my own. People who get worse over time. I write this blog in order to look back and see how I have progressed but also for others to find and hopefully find solace in. I try to find people who are further in the TSW process than myself, that their skin looks like mine, to try and make myself feel better. "See, Karina, they looked like you and they're getting better." I'm starting to freak out. I know this is just part of the ebb and flow process. One step forward, two steps back. But what if I'm a rare case that takes 5 years to heal or something crazy like that?!?! UGH.

Okay, here are some pics of the last few days. I only take pics of my face and hands because that is the only part of my body that is not covered. But most of my body is covered in eczema. My arms, feet, ankles, and back of knees are bad. Ill try to takes pictures of those areas for my next post.

This is my face AFTER a bath. It always looks better after a bath. I look like the Joker from Batman. :(

Neck. After bath.

Sausage fingers! But the swelling finally came down enough that I could get my wedding rings off. I had been using my ring to scratch so I really needed to get it off. It would leave gashes of broken skin. Mind you, I could get my rings off during my entire pregnancy but couldn't get it off for months during TSW.

I use the front of my hands to scratch because they're so rough. Better than my fingernails. Though take a look at my nails, they're really short, yet they still cause massive damage.

The palm side of my fingers are perpetually wrinkled and dry.

My sheets after ONE night. This is embarrassing but must be documented.

My face is my biggest issue. Obviously, the ooze needs to stop. OOZE, YOU ARE UNWANTED. BE GONE!!! Lol. But seriously. It's been months and my mustache area remains raw and unhealed. Throughout the day it scabs, collects lint, and then by nighttime is wet and dripping ooze. At that point, I can literally roll off the lint and dead skin. Dr. Rapaport said it's not infected but then when will it go away?! 


  1. ouch Karina :( my face was like urs earlier but worse actually. it will get better hang in there!!! I did it, i did it with a loving husband, a baby and a toddler with my raw face and body so u can do it too! it's hard and it's heart breaking for you and everyone that loves you but it's worth it in the end. Good you started MW. Try to stay away from water too. My skin just ends up drier after showers and baths. I know it's smelly and yucky but just change clothes more often. I got my sister to buy me lots of long sleeves cheap tops and I changed 2-3 each night back then. Glad those days are over. and so will yours :) ur husband is so great and ur family will get through this black hole. xxx ahfaye

    1. I know, I'm actually feeling a bit better today. I just have to remember that it won't last forever but this time it was hard. Your blog is the only one I've found that looks works than me in the face! So it's great to see you healing because it gives me hope.

  2. hang in there Karina. You are a strong woman and this will pass.

  3. how do you take a bath??? ! its so much pain for me to take a bath.