Moisturizer Withdrawal Log: Day 7

Merry Christmas to all! Hope you are all enjoying your holiday.

I had a family dinner yesterday so just staying in today and I'm still dry! I'm finally getting used to it by now BUT...

I'm so frickin' itchy!

So, I've been sleeping 4AM till 2-3pM these days which is good b/c while I sleep, I don't really itch.

During the day it really isn't that bad but once midnight hits, ungodly amounts of itch set in. I have been uncontrollably scratching my neck skin, probably because it's the only area that's exposed and past couple of days I've been really been oozing out where I scratch.

I know we're supposed to prevent scratching during moisturizer withdrawal but I've really been having trouble lately. At least by the next day it dries up. I think it's more about itch/pain management and I'll have to start preemptively taking pain killers before the itch hits.

What are some of the ways you prevent itching/scratching? I'd really love to know.

Moisturizer withdrawal days 3-4

Day 3:

Yesterday was quite uneventful. Skin continued its desert like appearance and I pretty much slept all day. Woke up at 2pm, napped again until 8, slept at 4am. Only issue was starting around midnight, the itch attacks really hit and I couldn't help but scratch my neck area since it's the only area that is exposed. Rest of my body is covered with clothing. I got a bit of ooze going and a lot of skin shedding. Eventually, I popped some pain killers and went to sleep. 

Day 4:

Again, pretty uneventful. Woke up at 2pm.

Skin continues to be desert like and when I took of my clothes prior to shower, I must've had a good 1/4 cup worth of skin flakes fall out from my clothes. 

Showered w/o washing hair or using soap and immediately dressed after drying off. Despite flakes hanging off from skin, I'm trying my best to let them hang on until they're ready to fall off naturally. 

Stayed busy the past few hours buying at least 2 weeks worth of food so I can stay inside for the near future without having to run errands. Skin is really tightening and feeling like it's ready to crack, e.g. when I walk I can feel the top of my foot's skin cracking.

Here's some pics of my "best skin" vs "worst skin". All look pretty bad :]

"best"

"worst"

Moisturizer Withdrawal Log: Day 2

Not much has changed. I did get a full night's sleep though (worth a celebration!), once I found a comfortable position where none of my skin was stretched too much. I find "first position" of ballet is a good way to lie. It airs the armpits and doesn't tax the wrist skin.

Also, there were less blood spots on the pillow in the morning AND when I showered, it felt like the skin flakes were holding on tighter.

So in the morning, my skin looks like lizard skin, scales of all sizes covering my skin. I routinely gently slough off the skin in the shower. Today, it felt like there was less skin sloughing off which I see as a positive sign because my skin actually wants to stay on!

This lovely desert scene is quite reminiscent of my skin's current state

It is really quite scary looking at my scaley skin (it literally looks like a cracked desert covering my entire body) and I think my brain processing that image makes me more itchy than the skin itself. My best course of action is just to stay covered so I can't observe my skin's state. 

Again, still lightly oiling my face skin with grape seed oil but tomorrow, when vacation starts, all moisturizer will cease forever!! (forever.. forever..)

face with light oil vs neck on day 2 MW

I'm really feeling quite positive about the whole thing as this taut skin is pretty bearable as long as I stay relatively still. 

Yay to positivity!

Please keep the comments coming about your experiences with MW! I love hearing them and find them comforting. And hopefully will get a blog list going here as well. Thanks for the support!

Moisturizing Withdrawal Log: Day 1

Preface

I feel like we are all on the defense when we begin the TSW journey. People are always telling us, why don't you just apply the creams? Why don't you just go to the doctor? and on and on. To which I fall back onto my preprogrammed responses "I'm doing what's making me comfortable, it just takes time." After a contentious couple of exchanges on my last post with Dan D, I took a moment to look at my condition (the worst it has been in months) and really question: Why not try Moisturizer Withdrawal (MW as it's known to "veterans")? 

I had tried stopping moisturizing for maybe a day or two max but always told myself it wasn't for me because the skin flakes up and tightens so bad initially. However, I already shared the philosophy that overmoisturizing just makes the skin's integrity weaker and it seems that since I started my TSW journey, a good number of sufferers have tried MW and had positive results. 

So, thank you to Dan D for reintroducing me to this idea. Since the Christmas to New Years holiday is coming up, I'll take this chance to really give MW a chance beginning today and document the progress under "mw logs" in addition to my typical monthly updates. Rather than just sticking with it a day or 2, my goal is to go at least a month since it takes at least 2 weeks for the benefits to appear. 

MW Day 1 - 12/19/2013: Stopped moisturizing since yesterday afternoon. I actually felt less itchy the whole time until bed time. After I went to sleep, I could feel the skin really starting to dry out and flake up. Around 5AM I woke up having to rub a ton of skin flakes off from my neck, arms and chest. Chest also started oozing up very badly (soaking into shirt). Due to discomfort I was up for about an hour.

Next morning, I showered as usual (only shampoo, rubbing off dead skin). Out of the shower, I patted some hyaluronic acid (Dr. F's) onto my face b/c I'm still going to work today. Skin took about 5 min to dry out completely. Face completely lost mobility and face and neck have that "plastic" glaze. Rest of skin is flaked up but I just waited until the skin dried and got dressed. Face continued to dry and lose mobility so I just patted a very light layer of grapeseed oil on my face stopping at the chin.

Took a nap until 11AM and so far am not feeling too itchy despite the ridiculously flakey appearance of my skin. Only real discomfort is the lack of mobility due to taut dry skin.

Had one itch attack after I got home from work, probably due to boredom more than anything. Difficult to keep from scratching but eventually just covered up with clothes and continued my day. The back of my neck did start to ooze a bit due to scratching so I am using toilet paper as a collar to absorb extra moisture.

The rest of the evening has been ok as long as I stay kinda busy. Mobility has definitely improved throughout the day and I no longer feel like the Tin Man from The Wizard of Oz.

Please leave a comment if you've tried moisturizer withdrawal and how it has worked for you!

7 Month Update - December 16, 2013 Big Flare #2 is ON.

Big flare #2 has come. And it ain't pretty. 

Since the beginning of December, my skin has really started to act up. An extremely dry cold front hit Northern California and it has really affected how my skin has been. 

Current Issues:

• My skin can't hold any moisture whatsoever. 
• Increased flaking/shedding (like, if I put a shirt on and take it off immediately, there's flakes)
• Increased swelling/elephant skin
• More areas are affected, different than flare #1, listed from worst to less bad:
• Left ankle - holy guacamole. constant scaling of skin, dry, weeping nonstop (paper towels worn under socks), swollen
• Wrists - dry, hypershedding, weeping, swollen
• Back of knees - dry, hypershedding, weeping, swollen
• Upper chest/upper arms - dry, hypershedding, 
• Scalp - dry, hyper hyper shedding
• Groin folds - dry, moderate shedding, discoloration
• Back/upper legs - dry, light to moderate shedding, red patches
• Face - dry, light shedding (thank goodness for this)

It's like I have to learn how to cope all over again. For the first week or so of this flare, I was pretty much in denial. I thought to myself, my skin must just be acting up due to the weather and it'll be gone in a few days. 

Well, two weeks later the condition has worsened and I can finally say for sure that I'm in a big flare. Starting to adjust to weep prevention (Domeboro solution, paper napkins and cotton clothes) and itch/flake control by wearing my tight clothes again. 

It's a blessing that my face is not taking the brunt of the flare this time but then again I'm fixated on my ankle which seems to have 2-3 turnovers of skin a day. But the skin doesn't feel very substantial and is so ready to fall off at the lightest scratch. 

And without further ado, some pictures of my misery.

All of my skin now has redness somewhere. Especially concentrated in the wrists and upper chest. Aah so itchy.

Back is least of my worries, only light red splotches but a bit more itchy than normal.

Knees are very bad this time around, often times feeling wet from weeping if I randomly check on them. Gotta spend more time with my legs straight.

And the grand finale. Note the extent of the left foot's elephant skin indicating swelling (pictured right). Left ankle appears larger in diameter. No bueno. Skin does not want to stay intact but instead raises into scales before new skin is ready. Second toe has constant ooze.

Holy edema Batman! This photo is 10 hrs later than the above photo.

I was really starting to feel hopeful after last month's update but this flare is reminding me that healing will be a longer time away than I had hoped. Pretty bummed about the whole thing but I feel like I'm handling it slightly better than before. It may not be long before I have to take pain killers again but I'm trying to avoid it for now. 

Anyway, hope winter is treating you all better than it has for me. 

Until next time,

Megan

Skin shouldn't look like this!

My left foot seriously feels like it is rotting off. Constant skin shedding and lack of healing is driving me up the wall. My whole body is suffering but this spot is taking the brunt of the abuse. Damn you topical steroids, damn you to hell. 

Why won't you heal?

Topical steroids caused this hell.

Covered with moisturizer, you can see the extent of redness better. Disgusts me to see this. 

Winter has not been kind. Dec 3, 2013 gross picture update. (apologies in advance)

Since it's started getting really cold, my skin has definitely had some difficulties. 

First, I can really tell where my TSW skin is now because it doesn't hold a lick of moisture. Not a bit. I'll slather my skin in my "magic" cream and a couple hours later, the affected skin is bone dry. Before winter hit, I could survive moisturizing once or twice a day. Now it's a constant battle. 

I wake up with my entire chest, shoulder, neck, wrists and face being ashy and bone dry so I have to immediately shower and slather with cream. In addition, I have to apply moisturizer constantly and it just adds to the itch that I feel...

Cold really hurts. Even though the heater is so drying, it's almost preferable to having no heat and my skin being pretty uncomfortable through the night. Sleeping is way easier with the heater blasting and my skin being bone dry as opposed to having the cold on my skin. 

Shedding has come back really bad. Since I can't keep up with my skin drying out, the flaking up of skin has been inevitable. On top of that, my skin has gone back to being very itchy when I apply my moisturizer and I end up scratching and lifting more skin in the process. 

I don't want to say I'm flaring necessarily. My skin is just really not putting up with the winter months. All my pesky symptoms are back and it's just a matter of managing them to let my skin heal up. For example, my itch is so bad I'm constantly scratching open my left foot. I think if I just were able to let it heal up for a few days, it wouldn't be so bad but the itch is hard to fight!

Ugh. Winter sucks. 

Unhealed skin is much more red and constantly itchy

Left foot is out of control! Elephant skin all over and light oozing.

Close up. This spot won't stop itching and oozing!

How are all of you adjusting to winter and what steps are you taking to make yourself comfortable?