Positive Reinforcement

Healing does happen! 

A little positivity goes a long way. It's amazing how many forms this skin condition takes. A little glimmer of hope... A twinkle of that light at the end of the tunnel. Yesterday, me and the boy had a GREAT skin day. We woke up really flakey, but after a nice bath and light exfoliation, we had new and healthy skin underneath. Itching was virtually non-existent and flaking skin was minimal. These are the good days. This is what healing looks like: 

[February 20, 2016]

It's really crazy how much things can change in just a day. Today is a new day, and I'm happy to report that the both of us got some great sleep last night and woke up feeling alright! Hopefully this offers some encouragement... It's a long process, but remember, it's worth it. Happy healing friends! 

Time flies when you're having fun...

5 months down, 155 days...

Updates are good, and today I have pictures. I've been really avoiding the camera, because in my mind, if I can't see how bad it looks, I don't think about how bad it hurts. Not sure if anyone else feels that way? I think it's the whole "out of sight, out of mind" type scenario, for me anyway.

So, TSW still sucks. Just in case anyone was wondering... LOL! As a matter of fact, month number four might have been the suckiest so far. Besides looking like I'm 97 years old, the actual itching/burning has intensified. My neck and chest feel like they're being stung continuously by fire ants, and of course it doesn't go full blown until the moment I lay my head down... Because why wouldn't it? TSW, you itchy little beast with a mind of your own... As Liam Neeson would say "I will find you, and I will kill you." - That's right TSW, I'm coming for you! HAHA, just kidding... this shit owns my life. Sigh. 

Right now, my routine really just consists of "waiting". Honestly, I've realized that there really isn't much else I can do, but wait. The saying "time heals everything" takes its most literal form here. Unfortunately, the days are long and the nights seem longer. I've had a consistent flare cycle, which typically lasts 3-6 days, then I get about 2 good days, and then the cycle repeats itself. That has been the general tone since I started TSW, but like I said, it seems that the rashes have intensified. I have not changed anything in my diet, as food has never been a trigger. There isn't really much else to eliminate that might have a direct impact on my flares. I know this is a controversial topic, but for me, diet has nothing to do with it. However, I will say that if I am not drinking AT LEAST 64 oz of water daily, I notice a significant difference in the way my skin feels. The flaking is worse and my skin feels like the driest day in Death Valley. That is the only impact diet has on me at the moment. 

Everyday is a struggle. The worst time for me is the morning... I wake up and it's straight to the bath I go. Laying in bed after waking up is a thing of the past. I can't lay comfortably because my skin is SO tight, dry and burning (seriously, fire ants), that simply moving sends me into a full blown scratch attack. Or, there are the days I wake up drenched in my sweat and smelling like a dirty sock, followed by extreme itching. I actually prefer to wake up sweaty, because then I feel that I actually have some elasticity in my skin. Typically, I don't feel ANY elasticity until I've had a 15 minute bath and my first bottle of water. After my bath, I pat myself dry and then I spray my face/neck/chest with La Roche-Posay Thermal Spring Water spray, wait for about 5 minutes and then I apply Vaseline to the dry patches on my face/neck. Over the last 5 months, I've gone back and forth with moisturizers/lotions. My skin is changing constantly, so there are times when I need a good moisture sesh and I can tolerate it. Right now, I'm not using anything on my body, just Vaseline on my face. My skin heals MUCH faster when I don't put anything on it. Novel concept.

Itching and scratching... what can I say? It's miserable... Looked like my arm was mauled by a pit bull the other morning, so in order to get through my work day without blood/ooze all over my desk, I wrapped it up real nice.

...and I took these today. Ugh! Those TSW eyes... I can't believe how old I look. :(

My arms have taken the brunt through this process. Always red, always itchy, always burning... Even on the days that I'm not flaring, my arms look like this. I've been living in sweaters and long sleeve t-shirts oh and BIG sunglasses to cover up those TSW old lady eyes. And yes, I do wear them on cloudy days and inside the grocery store, I'm THAT person. 

Hopefully you are all doing well. Keep fighting the good fight! Remember, at the end of the day this is a guaranteed win.

"I've been absolutely terrified every moment of my life - and I've never let it keep me from doing a single thing I wanted to do." -Georgia O'Keeffe

The only way to get past it, is to go through it.

Happy 4 month anniversary to me (121 days)!

So, it appears that I haven't updated my blog in a couple months. After Halloween, the holiday madness began. I am seriously looking forward to the New Year! With that said, I have to talk about the last 3 months, because there have been a lot of changes. 

TSW reared it's ugly head at 3 months. Almost exactly to the day and I've been flaring ever since. I will say that I feel extremely fortunate that my symptoms and overall withdrawal have been manageable. I feared the absolute worse and hoped for the absolute best... The good news is I'm right in between the two. As I've said before, each case is unique to each individual person. I hope I can offer some encouragement to those of you just beginning this journey, because I do understand the fear that plagues you in the first weeks. As difficult as this has been, I still have my head in the game, continue to keep a positive attitude, and always make a solid effort to live life as "normally" as possible. I don't have much in the ways of advice on how to find relief or get "comfortable", because as of right now it is non-existent. I am at the mercy of weather conditions. El Nino where you at?! It's been cold, dry and windy here in beautiful Southern California... I'm like "can I get some more rain?!" 

With all that said, here are my current symptoms and changes since the beginning of month 3 (90 days) through today (121 days):

-Weight loss: 14 lbs. (which is definitely not a complaint, this is the best thing so far!) I do believe it has a lot to do with the lack of (ZERO) cortisol in my body. Excessive cortisol hormones do cause weight gain/retention, and since I was pumping my body full of cortisone on a daily basis there was no where for it to go, except my ass.

-Increased redness/rash: Typical and as expected. Arms, chest, neck and lower abdomen to pubic area are inflamed and red all day, everyday. Rash has spread to areas that have never been a problem and/or haven't been a problem since my early teens, such as my wrists, top of my feet and ankles, as well as my underarms/pits. There are very noticeable pigmentation differences down the sides of my torso, groin and wrists. Not necessarily rashy, just big raised blotches... Looks like I drank 5 margaritas and passed out in the sun for hours without sunblock. Which may have happened on a trip to Mexico one time, hence my comparison. 

-Skin sensitivity/condition: Thin, fragile, breakable, tight, itchy, dry. I had a rough New Year's weekend. My neck was cracked and bleeding in every crease, my ears were swollen and oozing, my cheek bones were RED and oozing as well. It honestly does not take much to break/crack my skin these days. So, in true TSW fashion, I'm just waiting it out... Since I don't really have any other choice, huh?

-Routine: So I wish I could offer some solid ground breaking product or regimen. In the first couple of months, I completely did away with moisturizers. Up until about a month ago, I incorporated some new products:

Bella Dry Skin Formula | La Roche-Posay Thermal Spring Water | Heather Loraine Jojoba Oil

1. Bella Dry Skin Soap: You can get this at any nutritional store (Sprouts, Whole Foods, etc.). I'm a big fan of this soap for several reasons. One, it lasts for a decent amount of time. Two, it actually provides some moisture while bathing and lastly, there is little irritation or burning.
2. La Roche-Posay Thermal Spring Water: This is a unique product. I was turned onto this by a few of our fellow TSW warriors on the Facebook TSW Support Group page. It is a great way to add a little relief to dry tight skin. It offers some moisture without having to slather on the lotions/creams. Just a little spray on my face/neck a couple times a day, really refreshing... No itching, no irritation or burning. I know that I'll continue using this even after TSW.
3. Heather Loraine Jojoba Oil: Another product suggested by some TSW warriors. I like it much more than other oils (Vitamin E, Tea Tree...) since it seems to be the most natural feeling and absorbs without drying. I noticed that some oils actually make me more dry than before I applied it. This is another product I'll continue using after TSW.
4. Cool Mist Air Humidifier: Where have you been all my life?!?! Seeing as how I live in an area where air humidity is minimal to non-existent, I set up a really good quality air humidifier in my bedroom. I will be purchasing one for my living room as well. I have noticed that my skin is not nearly as dry when I wake up in the morning. I don't really feel the need to roll out of bed and crawl to the bathtub immediately.

We ALL know too well that none of this/anything works during a flare. Let's be real, the only thing that helps during a flare is the constant reminder that you are actually healing. These other items are simply my way of getting as comfortable as possible while this TSW bullshit runs its course. 

With that said, happy healing my warriors! Keep calm and scratch gently. :)

"You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You must do the thing which you think you cannot do." -Eleanor Roosevelt