Sunday, August 31, 2014

TSW day 251 - picture update

Well, our vacation did not go as planned. It turns our my worries about bathing were well founded, though misdirected. I'm 5'8-5'9" tall and it seems too big for standard size tubs. But the tubs at my mother-in-laws' were not even standard size. Apparently the people who lived there before were really short and the house was made accordingly. Even the countertops in our bathroom were really short. How did I never notice this before? Probably because I never actually took baths before this whole ordeal. So this is how it went... Arrive at house. Put baby to sleep. Go to clean tub. What? Tub only comes up to my shins. How is this going to work? Whatever, let's jump in and find out. I can only extend my legs if I'm sitting up straight. If I want to submerge my neck/face, I have to curl up in a ball. This wouldn't be a problem if I wasn't flaring because when I'm flaring and I stand up in the bath, any open wound is brutally attacked by the air. So I essentially had to bathe in sections which meant that every open wound was assaulted about every 60 seconds because I had to wriggle around the tub to submerge every body part. I quickly pick out any lint that is stuck in my wounds, as that is what I do in the tub, because if I dont then when it dries it will bother the heck out of me and I will rip it off along with any skin that has adhered to it. So doing it in the tub is better, less damage. The next morning is the same routine except now I'm aware of the torture that lies ahead (okay, I'm being a little dramatic but that's what it felt like). I decide to shower instead. Big mistake. HUGE. The water pressure is amazing at the house and usually I love taking showers there but you can imagine how that feels against a million little cuts and open sores on my skin. I was literally covering my mouth and screaming in pain as I quickly did my thing. Within 2 minutes my husband ran in the bathroom asking if I was okay. I was sobbing. How did he hear me?? I thought I was covering it up pretty well. I guess in older homes, you can hear through the vents so he heard me and came in to support me. Aw. So now showers are out. Later that day, I went to the bathroom and started to panic about the bath I would have to take later. Later that night, I DID panic after that bath. I think I had a legit panic attack. I was crying hysterically and felt like I was breathing out of a straw and sounded like a dolphin gasping for air. I really did not want to bathe in there again. Ugh, why am I so high maintenance? The next day we checked into a hotel. And guess what? The tub there was not that much bigger. Luckily, it was 2 inches taller so it almost came up to the bottom of my knee. At this point, I would take anything but the tub at the house. But now I was in a full body flare. Wonderful. And because I had to bathe at night and the baby was asleep in the living part of our hotel room, I had to creep in there in the middle of the night and hope that the bath I had filled with scalding hot water before he went to bed is still somewhat warm. And no, the bathroom was not attached to the bedroom. Needless to say, all the above equaled one stressed out Karina. I believe that was the cause of my full body flare. I mean, I'm like hypersensitive right now so of course this would stress me out. My skin was weeping again, was in incredible pain, and I would rip it apart every night. I remember on the flight over to NY thinking that my skin seemed to be healing. Damn.

I cried alot this past week. Like 2-3x/day. My skin felt like it was worse than it had ever been. For the first time during this whole withdrawal, I doubted myself. I doubted what I was doing. Luckily, my husband is completely supportive and told me just what I needed to hear to remind me that what I was doing was the right thing. That in the end, it will all be worth it. Thank God for him. Anyway, we ended up leaving early because I was just a hot mess. I had intended on toughing it out but on the 4th night, I had a bath so bad that I knew I couldn't take it anymore. I couldn't do that for another 2+ weeks, 2 times a day. So my wonderful, amazing husband took me home. OMG, I missed my tub!!! I never realized how big and beautiful it is. Oh, I love that tub. LOL. So now I'm home and my skin is SO much better. It's crazy how quickly it changed once the stress was removed. Yesterday was a good day. If I had to quantify, that would be the 4th good day in the past 6 weeks. Which is not so good. But it's okay. The full body flare seems to have receded and I'm left with localized flares in the regular spots. Above my lip, chin, neck, wrists, top of my feet, back of my knees. Unfortunately, I'm about to enter my premenstrual week where my skin always gets worse. But at least yesterday was a good day and today seems to be a good day. I need a good day here and there to remind me that my skin is capable of healing.  Anyway, here are some pics of the past week and a half.

Oh, look what I found at the house in NY! I refused to touch them. Made hubby collect & trash them. This wasn't even all of them. They kept popping up everywhere. 

This picture is blurry but shows how wet my face was

These little splits hurt way more than seems possible

And today. As you can see, less red, less open, less wet. More happy :)

Oh, and a couple days ago was my 8 month anniversary off topical steroids! Hoping the next 8 months are not as bad as the first!!


  1. Oh sweetheart. I got anxious just reading your post. TSW is torture! Hope you get some well earned relief soon. Sam x