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

Day 34 - Month 2

One month down... 

Well, the last few days have been a blast. Starting from the 1st day of month number two. It definitely wanted to welcome me accordingly. Since Wednesday night, I have probably slept a total of 12 hours, collectively. 

Today I am feeling much better, but the last 3 days have been itchy... My neck, face and arms were really tight and dry. I felt like if I turned my neck, my skin would tear. I actually did an ok job of not scratching. I kept ice packs on those areas several times a day, as needed. It did help with the itching and brought down the inflammation.

On Wednesday, I picked my son up from Grandma and Grandpa's house. They brought home an ADORABLE Golden Labrador puppy a few days prior. So, of course my dumb butt started to snuggle her, letting her lick me and jump all over me, because why the hell wouldn't I? PUPPY!! Well, her hair instantly effed me up! I could feel it sticking to my neck, and see it on my arms. Oh, hello flare. That evening/night, was so uncomfortable. Benadryl and marijuana to the rescue! I was able to fall asleep, but I woke up about an hour and a half later, scratching my arms raw. My ears were cracked and bleeding/oozing and my neck was burning. It wouldn't let up, so I made my way to the sofa and binge watched all the Ghost Adventures (it's my guilty pleasure) on my DVR. The good news is, I still managed to drag my ass off the couch and go to work on Thursday.

Friday was another story. It hurt to move any part of my body. There were red blotches on my arms, neck and legs. They were inflamed and itchy. A different kind of itch though, it burned and felt like I was being stung by bees repeatedly... Specifically the areas I just mentioned. The burning itch felt like it was deep under my skin and scratching it honestly did nothing. The itch could not be satisfied! As a matter of fact, I have bruises on my arms and legs from scratching so hard. I ended up working from home, I couldn't fathom getting dressed and leaving the house. It actually hurt to think about it. A dead sea salt bath was certainly in order. I spent about 30 minutes in the tub and then started to feel like I could move again.

My right arm took the brunt of it. My skin looked similar on my neck, and right side of my face. I did not take pictures because I honestly didn't even want to look at it. I avoided mirrors, knowing it would make me feel worse and/or stress me out, and ain't nobody got time for stress. I spent a lot of time playing with my little man... We watched movies, read a few books and a much needed snuggle sesh.

Today I was able to muster up some energy to do some work around the house. Which felt great! I am hopeful that tonight will be as kind to me as today was. Tomorrow is another day, which will probably be nice and flaky.

Day 29

Did anybody else think this? I remember contemplating this very thought as a kid... 

So, day 29. Almost 1 month in. I'm not kidding, I expected to be dead by this point. Each day brings a different surprise. Actually, 12 hours brings a different surprise. Sleep is a huge issue for me. I cannot get comfortable, at all. I toss and turn, both my ears are swollen, itchy and oozing. I rest my head, on my hand so my ear doesn't touch the mattress. Pillows are not helpful either. I am much more itchy at night, when I'm trying to rest. When I finally fall asleep, my uncontrollable scratching wakes me up not too long after. If I'm not scratching my arms, it's my back, or my ears, or my legs... and a lot of times they all itch at once. 

Overall, I feel okay. Just irritable, uncomfortable and tired. I continue to bathe in salt baths once per day. My skin can't bare the water any more than that. I feel like it just sucks the moisture out of my skin. I haven't been sweating or oozing much, other than my ears. I do wash them twice per day with the dead sea salt soap, along with my face/neck. Still no moisturizers, just Vaseline on my lips and eyelids (they are so dry and hard to open in the morning) and I've had success with this regiment. The first 2 weeks without moisturizer was SOOO difficult, but now that I have learned to "deal" with it, I couldn't imagine using it. I just don't want to piss my skin off anymore than it already is. Nah I'm sayinnn?! 

I'm still keeping a positive attitude, and looking forward to welcoming month number two. Just take it day by day, and taking advantage of the good ones. On those days I actually leave the house with my hair done and an outfit... Not a ponytail because I haven't washed my hair in 5 days or yoga pants, because the thought of wearing anything else makes me cringe. I still make it outside on those days, I just get into my "I don't care" mentality and tackle the day the best I can. My sunglasses are my security blanket. I'm a lot more confident about being out and about when I can hide behind them... You can find me wearing my sunglasses inside at the grocery store. Yup, I'm THAT person!    

Day 24. What's up?

Sleep? What sleep?

Sleeping has been minimal to non-existent since Monday. Scratching, being a big part of it, but the inability to find a comfortable position has been the main culprit. I'm restless and uncomfortable. My right ear is cracked, swollen, and oozing/bleeding... Let's not forget, ITCHY!!!! Resting my head on that side is out of the question. The ooze stuck to my pillow case, so sexy, I know. My back is also getting pretty red and rashy, which is a first. Wearing a bra, let alone a t-shirt seems like a daunting task. On a side note, I'm lucky my man loves me so much, because I seriously feel grotesque right now.

So, in addition to smoking pot to deter my attention, I've also been using Benadryl when I cannot stop scratching. I try to keep that as an option, not really a solution. Like I've said before, I don't particularly care to take anymore pills than I need to. I also don't want my body to become immune to it, because it has really helped me stop the scratching AND sleep. I can't speak for anyone else, but Benadryl makes me feel like I popped a horse tranquilizer. Night, night! So, I can only take one in the evening, and it typically takes about an hour to kick in, for me anyway. 

Diet. Ok, it does NOT help that I have a horrible diet and when I do eat, it's not much. I will seriously eat bacon for dinner. That's it, bacon. I'm trying to change that right now. I don't know if there is any direct correlation with how it affects withdrawal, I know this is another one of those trial and error type deals. But, it is just more reason for me to stop eating like a college bachelor. Currently, I'm drinking 2 liters (or more) of water each day. I've been adding oranges, lemons and basil to my water as well. It's a great detox and quite refreshing. Also, might make it a bit easier to drink more water if you already have a difficult time with your daily intake. I have also made a solid effort to eat 3 decent meals per day. I don't get cray with it, keep it simple, minor adjustments... One step at a time. I have also started taking a daily probiotic. Which I will say, if nothing else, at least it gets rid of a lot of extra bloat. Tried and true, friends!

With that said, here are a few photo updates:

Okay, so I realize that I look super unhappy in my pics, but I'm totally not. It just hurts to smile at the moment. The right side of my face is taking the brunt of it today. It is really hot/burning and again, uncomfortable, so I've had ice packs on it for the last 2 hours. The inner creases of my arms continue to be a nuisance. I actually scratch more there than anywhere else.

I know that my skin feels a lot worse than it looks and that's the crappy part. When people say "it doesn't look that bad, just like a bad sunburn", I'm like, "yes, you're right, this is totally comparable to a severe sunburn... When you have 2nd degree burns!" Bye Felicia!

With all that said, in comparison to what kind of withdrawal symptoms I've seen with others, mine have not been THAT bad. Because of that, I'm still shaking in my boots, waiting for it. This seems like the calm before the storm. :/

Coping with TSW

Medical Marijuana, No Moisturizers & Dead Sea Salts

When I started TSW, I wanted to find out what my fellow TSA were doing to "ease" the pain. If that is possible? I didn't want to overload myself with information or go out and buy everything that "worked", since each case is unique. Like most things in life, it is all trial and error. I made my decision based on what seemed most logical to me. Again, this is what works for me, at the moment and I will embrace that. If it continues to provide me with the best relief I know, great!

Let's touch on the use of medical marijuana. I'm a huge advocate for the use of marijuana. Why not, right? It is still not 'legal' for recreational use in the State of CA, however, if you have a Dr. recommendation then you're able to go to any of the thousand(s) of clinics throughout Los Angeles. I have used medical marijuana for a long time and for me it has multiple benefits. In addition to TSA/eczema/atopic dermatitis, I also have bipolar disorder and ADHD... I've been dealt an awesome set of cards. Lol! It took me a few years to accept it and to get the correct combination of medications, which I've been taking continuously (minus pregnancy) since 2008. I'm more high strung / high anxiety than I am depressive. My doctor has offered up Xanex, Ativan and Klonopin for the high anxiety, and I'm like "NO thanks!" They are highly addictive if used improperly and quite frankly, I have no interest in taking anymore pills than I really need to. 

When I started TSW, I did some research on the use of medical marijuana and topical steroid withdrawal. To my surprise, there wasn't much "talk" about it, so I'll share my experience:

• Great distraction. I notice that I do not scratch or even think about my skin nearly as much
• Relaxation. It is a lot easier for me to keep the anxiety and stress level down
• Sleep aid. Once again, helps turn my mind off and allows me to relax

I would like to add, that I am not a lazy pot head stoner, which is usually the general stereotype of a 'habitual' marijuana user. Not true. I'm literally the exact opposite. However, this is just me and my experience. Some people have no interest and I get that too. 

NO MOISTURIZER?!?!?!?! *Gasps* Yes, you heard me right. I'd found several articles and talked to a few people who ditched moisturizers during withdrawal. The thought of not using any moisturizers during TSW had me crawling in my skin. I've used them my whole life! What am I going to do? Well, I'm glad that I did. I ditched moisturizers because it just seemed to make the most sense to me. I think there are misconceptions on "moisturizer withdrawal" and in my personal opinion, I don't believe there is a physical withdrawal process. It absolutely is a process though! Seems like common sense to not to put anything on my skin while it is trying to heal. I discovered this rather quickly too. About 7 days into TSW, I was still using moisturizer. After I bathed, I applied my lotion liberally (as always) and noticed that my skin felt so much worse after using it. I was swollen, RED, burning and itchy... I knew that moisturizing was going to do this, and I realized at that point that I'd rather be dry and flaky, than red and itchy. Don't get me wrong, I'm still red and itchy, but there has been minimal burning, zero swelling, and the itch is occasional. I figured I'd let my skin be it's own barrier and let it restore itself since it's been through enough already.

Dead Sea Salt (DSS). Soooo, take a bath in super salty salt and then don't moisturize afterward... What kind of sick alternate universe am I living in?! I've avoided salt water like the plague for the last 12 years. Always going to the beach, but never going into the water, and that was no exception when I went to Maui. How sad that I never stepped foot in the water while I was there... Guess I'll have to go back. Bummer. Anyways, I'd been told be a couple of people that dead sea salt was great for TSW, so I got a few DSS products that I LOVE. I will promote it because it works very well for me and my son (also in TSW). Does it dry out the skin? Yes and no. Does it burn? The first couple of times, yes. It's a "good" burn though and does not last long. Here are the products I'm currently using:

Dead Sea Salt Soap | Dead Sea Salt Bath Salt