Words of Wisdom

To all of those going through TSW, this is a good thing to keep in mind:

17 Months

My skin is still good and so am I! The only thing I have noticed in the past week is that my lymph nodes in my neck are a little swollen -- not as badly as during the earlier months of TSW, but more than normal. I know I have been very stressed, not going to bed as early as I should, and not eating as well as I'd like. Hopefully it's related to those issues and not a sign of an upcoming flare. Fingers crossed!

A Thousand Words

You can click for the full-size image.

454 Days Off Topical Steroids

Oh, hey!

What's up?

Haven't been in here a while.

I guess that's a good thing. :)

So since the last time I wrote anything, my little bits of rashiness have slowly faded away. Now I just get a teensy tiny barely bit of a flare around That Time of the Month and that's it. Barely anything and is less and less each month so I'm sure eventually it will be nothing.

I have gotten back to working out, which makes me really happy. About two months before I started TSW, I had started going to a bootcamp-type gym and, well, obviously that ended once I started TSW. As most people who go through TSW know, the last thing you feel like doing is a work-out! So although I did not gain any weight during TSW (yay! although seriously the LEAST of my concerns during TSW), I still have my pre-TSW weight to work on. I am signed up for a 5k at the end of this month and I've been using the Get Running app. I ran! And got sweaty! (Which, as most TSWers know, is a miracle in itself!) My skin does get really really red during my runs but to be honest, I am very pale and very out of shape, so I think it probably has more to do with that than corticosteroid damage. I am also working on eating healthier which I will be posting about at my other blog (link if you're interested).

My skin is a tiny little itty bitty bit drier on my arms than a normal person, but the rest of my skin is perfect. My arms are less dry than they were a couple months ago so I'm sure they will catch up. And honestly, it's barely anything. I'm probably the only one who notices and that's just because I'm so used to examining every detail of my skin!

A random little thing I've recently realized is that I don't have dandruff anymore. I actually forgot I had dandruff, since TSW turned my whole body into a flake-nado! But in retrospect, I don't think I ever had dandruff. It was just dry skin caused by all the TSA nonsense. I had a flaky scalp for as long as I can remember, no shampoo helped, not even the medicated stuff. Super embarrassing at the salon! Now it's gone. Oh and I used to get really bad scalp itch on the back of my head. Not anymore.

I do not use any moisturizer. I do not need any moisturizer, lotion, potions, creams. This is crazy to me. If you knew the number of moisturizers and lotions I've tried on my face since I was about 12 years old...! All with no success, no help to tame the dry desert that was my skin pre-TSW. The only products I use on my skin are some makeup (normal drug store brand, just concealer under my eyes, blush, and eye makeup) and EVOO to wash off the makeup. None of it stings or bothers me. My makeup doesn't flake off, either. And when I don't wear makeup, it's okay, too!

It's freeing to walk through a store, to see all the ads and commercials for skin products and now that I don't need any of them!

Oh and I wore a strapless dress in public. No big deal...

Look! Normal skin! You just have to go through hell and back to find it.

My normal pasty pale ghost white skin is back! Oh, and you may not know this about me, but I am TAN right now. I know. It doesn't look like it, but I am! I also wore a (different) sleeveless dress to a wedding two weeks ago and did not even realize or think about my skin until a couple days later when I did laundry. I wore a sleeveless dress in public without a sweater! And without any worries! And with NO ITCHING.

This time last year, my wardrobe was a bit different...

Despite the summer heat, I was freezing all the time all the time. I was wearing several shirts (1-2 tank tops, a short sleeved shirt, a long-sleeved shirt, and sometimes even a sweater or hoodie) AT THE SAME TIME, a scarf, a pair of heavy jeans, knee socks or tights, wraps or bandages around my arms, hair up so it wouldn't tickle my neck and make me itchy...oh, and about 6 lbs of moisturizer a day! Wearing all those clothes also helped me try to avoid scratching. (Try being the keyword since it was impossible to avoid it, but it definitely slowed it down!) And of course, long sleeves and jeans hid my awful skin from the world.

I have tons of pictures that I need to sort through and upload so hopefully I will get that done soon. I think I am mostly almost all the way healed. I'm not ready to call it yet, though. I am concerned about the autumn/winter, since cold weather makes even normal skin act up. I guess we'll have to wait and see. Until further notice, I am back to my normal life! (Or as normal as it gets, anyway. :) )

Things I Notice

I'm going on a little weekend getaway and I'm packing for my flight. I'm packing my little 3-1-1 liquid bag and I realized that...

There is nothing in it for eczema.

Or TSW.

A little thing of EVOO to wash my face with, contact solution, makeup, conditioner, hair product...

Pre-TSW I would have been struggling with all the lotions and potions I used to keep my skin from being too dry...I also would have packed a tube of topical steroids...I would not have packed sundresses and shorts, either!

During the really bad part of TSW, I would have been on Google trying to find out if Vaseline counts as a liquid and if I bring a homemade cream in a unmarked jar, would that look suspicious to airport security? And frankly, I probably would be a wreck right now and ready to cancel my trip, too scared of getting crazy itchy on the plane, not having my usual creature comforts (like a bathtub, an ice pack, a bucket of palm oil) to get me through the itch, totally exhausted from not getting enough sleep. I would be packing one of my giant men's button down shirts that I often slept in.

But instead...

I'm just packing normal things -- well, I guess some people would not consider the EVOO or the Primal Pit Paste to be "normal" toiletries, but a giant family-size jar of Vaseline would definitely be less normal! I'm more worried about my carry-on being small enough than needing to manically claw up my skin on the plane, trying to squash the itch that cannot be caught.

I'm not totally healed, but my skin is okay enough and my life is pretty normal. Seemed impossible six months ago.

1 Year, 2 Months: Almost There!

I haven't posted anything in a long time, because really there's not too much to say! Which is good. My skin is generally okay - still have a little bit of rashiness on my wrists, inside arm, and behind the knees, but nothing bad. I'm actually wearing short sleeves sometimes! My arms are a little drier than they should be but it's more of an ashy texture than the really tight, cracked, flaking skin of earlier.

I am not using any moisturizer. Although my arms are drier than I'd like, I found that basically anything I'd put on them would just make them red and/or itchy. Since I don't have any issues with the skin being too tight/painful from the dryness, I just gave up. My face is sometimes a little dry in places, but no big. Actually the texture is better than when I was on TS, so that's a big win! No redness whatsoever. I use EVOO to wash my face and that's about it.

As far as quality of life goes, TSW hasn't slowed me down in a very long time. Which is great! I am back to sweating like a mostly normal person. I started working out again and it hasn't sent me into flares -- I get really red during it but not itchy and it goes away once I cool down. I am wearing makeup again without any issues. I am making sure to get some sun, too! I was able to cut my hair shorter now that my neck won't be bothered by it. During the really bad TSW my hair was almost always up because otherwise it tickled and made my neck itch like crazy.

Here are some comparison pictures of my face. I don't have too many because I hate taking selfies and I feel dumb asking someone to please take a picture of my itchy un-made-up face. But here are a couple I could find, all are without makeup or photoshop. In the pictures, you can't see the texture -- the first two, my skin was both very very very tight and very very very dry.

In the first one, I kind of look like I'd gotten too much sun but that was definitely NOT the case since I was hiding in the house as much as possible. I was RED, redder even than this picture shows. My smile was definitely forced -- what you can't see is that I was absolutely miserable that day. It was very hot but I was freezing -- which is a hard feeling to explain, like I KNEW the weather was warm, I felt that it was warm, but I couldn't stop shivering. My skin was burning and itching. I was at a family event and trust me, I would definitely have preferred to be in the bath. And I was red pretty much everywhere! I'm wearing a long sleeve button down and kept trying to pulling the sleeves down over my monster hands. I was VERY self-conscious - please don't look at me, please stop taking pictures, can I go home and hide now?

In the second one, my face was less red, less itchy, but still very tight and dry. Still a bit of a forced smile because my skin was so tight it hurt! I was out at a sports bar for the big game with a group of people. Some I didn't know so I was very self-conscious to meet new people. I went to the bathroom a bunch of times just to scratch and put lotion on to try and tame some of the facial flakiness. I have a bit of a crustache going on, my neck was so tight it was hard to move my head, and I was wearing four layers of clothes because I was so freezing cold!

In the last one, my skin is pretty much normal! Yay! I only thought about my skin for a few seconds, because my eyes looked tired and I wanted to put concealer on (but didn't have any). I didn't think of any TSW-related issues at all. I was meeting a friend's new baby. When I met another friend's new baby a couple weeks prior, I was self-conscious holding the baby because my hands were so red. But I actually didn't think anything of it this time around. I'm still wearing a cardigan, but at least I'm not wearing a million layers of clothes like other times!

So that's my current status. I think I'm like 85% healed...hard to put a number on it, but when I compare where I was to where I am, I'm doing great! I think the summer sun will help me kick the last of it and hopefully I'll be able to wear a fun party dress on my birthday in October without thinking of my skin at all!

Day 329: Red Hands!!

The past couple of days, my hands have been super lobster red. Just the top, not the palms, and they aren't any itchier than usual, but they're so bright! I don't like it! >:-(