Wednesday, April 30, 2014

Color My Symptoms

I found it really hard to describe my progress in TSW at some points. I wanted to find a pattern and finding a pattern required gathering data...but most of the time, all I was really left with "better than yesterday" or "worse than yesterday." At some point, I started doing these:

Topical Steroid Usage
Dark Green: LOTS!
Lighter Green: Less
Topical Steroid Withdrawal Symptoms
September 2012 -- 4 Months Off TS

Red: Most Severe
Darker Pink: Medium
Light Pink: Low
During the summer of 2013 (mid-June to early-September), my skin was all clear and happy! Then the weather turned and although my skin was less happy, it was nowhere near as bad as before. 
Topical Steroid Withdrawal Symptoms
December 2013 --1 Year, 6 Months Off TS

Red: Most Severe
Darker Pink: Medium
Light Pink: Low
Topical Steroid Withdrawal Symptoms
Beginning of April 2014 -- 1 Year, 11 Months Off TS

Red: Most Severe
Darker Pink: Medium
Light Pink: Low

Barely pink, itches sometimes.

So that's where I currently am. The weather is starting to warm up and I'm already seeing improvements in those little spots that bothered me at the beginning of April. I have to be honest, though, I am anxious that this is going to be a lifelong trend of "winter :( summer :)" which I really don't want. I want year-round :) but I just will have to wait and see, I guess.

Also if you want your own coloring person, this is the one I used:

I found it off a Google search for coloring page people, then I just opened up MS Paint and colored it in. I wish I had done this monthly or weekly as it really helps me "gauge" and see the bigger picture.

Wednesday, January 8, 2014

20 Months (I Think?)

Just a little update since I haven't been around too much...

When the weather got colder again this fall, my skin went back to being stupid. I have red rashy hands, inner arms, face, and neck. It sucks, I feel ugly, but it's not nearly as bad as before and I don't have any of those other symptoms other than some itchiness (which is not as bad as before). Given what I know about TSW, it's of course very likely that the summer was just a break and right now is just a flare and I'll eventually get longer and longer breaks until there are no more flares. 

But I also wonder if maybe the damage from the topical steroids has mostly healed and I might still be left with that genetic predisposition to get a rash when something [cold weather, junk food, too much sugar, too much dust, whatever] triggers my immune system. Since I was going to change my diet anyway (what with a wedding dress to fit into and all) (oh, yeah, I'm getting married this summer!) and I know my skin gets much worse lately when I have lots of sugar, eat junk, and drink alcohol, it just made sense for me to focus on something that eliminates some of the more common potential irritants. I'll be doing a Whole 30 challenge. I'm on Day 3 and it's going pretty well but it does require a LOT of prep-work. 

Lots of TSW-people say that nutrition makes no difference, and that may be the case. But since this "flare" feels different than the others, I figured it's a worth a try to see if it's less of a TSW-flare and more of an eczema-related flare. And, like I said, I've been working my way up to changing my diet, eliminating gluten, dairy, sugar, etc., for a while now. I do not consider this a hardship. Lots of TSW-people say not to eliminate "comfort" food because you're already miserable from TSW and I totally 100% agreed in my early days of TSW. NO WAY could have I undertaken a major nutrition overhaul since I started TSW! Remember all that prep-work I mentioned? No way could I have managed all that when I was itchyitchitchy 24/7 and exhausted all the time. 

However, now I am at a point where I am ready, I feel capable of doing this, and I believe this is the right thing for me to do right now. My TSW (or eczema?) rashes are ugly and slightly uncomfortable but not life-altering, so I can handle the extra challenge.

I have also stopped using moisturizers. The only 'improvement' that I have seen (it's been about a month) is that my red rashy areas are slightly less red, more ashy. But the other night I decided to try one of my homemade body butters (it's just shea butter and coconut oil whipped together) and while it was fine when I applied it, my skin felt very sunburnt the next day. So for right now, I'm not using moisturizer. It feels right.

So that's what's going on with me! Oh, and wedding planning. :)

Thursday, October 17, 2013

18 Months

For the past week or so, my inner arms have been itchy and a bit pink. My neck and forehead have also been itchy. Those are the only spots with itch so my fingers are crossed it will stop here. The itch is not really that bad (compared to a few months ago!) but it's annoying. I've been trying my best to not scratch since that obviously will make the skin redder and damages the skin. I've been really stressed out the past couple weeks so I think that's contributing to it...maybe I'll always have some atopic tendencies...maybe it's the weather...maybe it's just a little fizzle of TSW...who knows?

Saturday, September 28, 2013

Words of Wisdom

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

Monday, September 23, 2013

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!

Wednesday, August 21, 2013

A Thousand Words

You can click for the full-size image.

Wednesday, August 7, 2013

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. :) )