Day 922 (or 2 years, 6 months, 8 days)

It's been a while. Let's see...

I got promoted.
I moved in with my boyfriend.
We got engaged.
I lost 25 lbs.
We got married.
We went to Aruba.
(I gained 10 lbs back. Thanks all-inclusive resort with your endless drinks!)
Other random good things happened.

And for the most part...

My skin wasn't much of an issue.

I have a little redness on my neck and a spot on the inner arm and occasionally a small patch on my chin but here's what makes it different:

For the most part, I'm the one doing it.

It's not completely random like it was in the throws of TSW. It happens when I'm stressed/worried/bored and start scratching (mindless action like biting your nails). It also happens when I eat way too much junk food. I found out that my body likes the low-carb high-fat way of eating so when I ignore that and eat high-carb, my skin generally reminds me the next day.

This was not the case when I was 6 months, 1 year, 1.5 years into TSW. 

I know a lot of the traditional eczema patient literature likes to blame it on the patient ("Oh, your skin is red because you keep scratching so it can't heal! It's the itch-scratch-cycle!") and I know a lot of the TSW conversations about nutrition like to blame it all on food or needing certain vitamins ("Oh, your skin is red because you occasionally have a glass of wine and sometimes you eat Taco Bell! Here, try all these random vitamins and supplements that may vaguely be related to this!!").

I did not find either pieces of advice to be helpful during TSW. It was truly random and awful. Trying to simply "not scratch" was not an option. Trying special diets or supplements or moisturizers only to see no difference or be unable to stick with the regimen was discouraging. It was absolutely devastating to search for a cause when, in reality, flares were something that could not be controlled.

Here's where I say: This is just my experience. I know others have written about doing XYZ things and how in their opinion, it helped/hindered TSW. I know others feel worse when they seemingly sit around and do nothing. They have to try, after all. You can't just watch your house burn down with the vague hope that it will rebuild itself, right?

I understand that feeling. I felt that feeling. The "I have to do something ANYTHING." But in my experience: I could not control flares. I could try to avoid things that made my skin burn or itch more and increased the severity of the flare, but I wasn't stopping a flare that was already happening.

There was a cycle I experienced for a while:

• There is nothing I can do about flares. Hopeless. I am stuck in this awful itchy painful red reality.
• I must try everything I reasonably can try. Hopeful. This could be the key to unlocking my misery.
• This thing I've been trying is not working. I'm miserable. This will never end. There is nothing I can do. Hopeless.
• This other thing might work. I have to try it. Hopeful again!
• It didn't work. Now I'm even worse. Hopeless.

This cycle only made a miserable situation worse. I had to get out of this cycle. I did this by:

• Accepting that I could not control flares
• Accepting that my body knows what to do even if it takes a long time to heal
• Accepting that every flare is a sign that my body is healing even if it is an awful process
• Accepting that just like ocean tides, flares would come and go
• Accepting that this was just a season and it would eventually turn

"There is nothing I can do about flares, but I am hopeful anyway. This is not forever. This will go away."

Come Let Go by Xavier Rudd became my anthem in a way. This song helped me calm down in a flare and reminded me that this was just a season, just a wave hitting the sand before eventually going out again. "Come the wind, come the rain // Come the tide in, come the tide out again."

Now things are different. My skin no longer flares. It is different. And I don't think it's surprising that now there actually is a connection between what I do (mindless scratching, too much sugar) and my skin's appearance. That wasn't the case before. Then, there was no cause, not really. It happened or it didn't. Now I'm in a different season. Things are different. Things are better.

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.

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 for the most part, I agree. 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. :)

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?

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

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