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? 

6 month update: 1 step forward, 1 step back

Nothing much has changed if I compare last month to this month. Well, at the beginning of the 5th month, my skin was getting better. But then the weather changed.

Winter friggin' sucks. Since the cold and dryness have set in, my skin has kind of reverted back to their previous state. It feels like it's in a limbo and doesn't know if it wants to get better or worse.

Folds are itchy as hell in the evenings and producing a light amount of flakes again and my pesky left foot really doesn't want to heal. 

Both ankles and tops of feet have patches, though left one is way worse. Left 2nd toe also developed a patch.

I have patches on my second left toe and left ankle, as well as my left ring finger and between both my hand's knuckles that just kind of persist, not getting better or worse, unless I scratch them too hard. 

This is what happens when I scratch. Must have self control.

So I'm really just trying to prevent scratching by wearing long socks and long sleeves if possible during the evenings. If I'm really diligent, I have pretty good skin days. 

Luckily, sleep seems okay thus far and the itch doesn't really get to me during the day.

My routine has gone back to normal, in fact I'm full on dieting to lose the weight that I've gained and thus far have lost 6 lbs which definitely lifts my spirits. I'm just hoping that by going back to my old routine, one day I'll just wake up and realize I'm healed!

I've also made a new batch of my cream and this time, added 1.5 parts olive oil : 1 part beeswax, with the same amount of honey. The consistency is way more spreadable which is great now that the weather is getting too cold for me to quickly melt it.

Anyway, this is a painfully uninteresting post but really, nothing is happening with my skin. It's just the same day in and day out and I'm just trying to keep my mind off of it now that I can.

Happy healing to everyone out there. The end is one month closer :)

5 months down! On the path to healing.

Each month is passing at a greater pace which is great news! A lot of breakthroughs have happened this month and I'm happy to say I'm feeling almost "normal" now.

Since my last post, my leg bumps resolved as of October 1st, and my burned skin has gone back to its previous state, the scar is still evident and seems drier than the rest but no other issues besides that.

My sleep has finally returned to normal without having to take any sleep aids or pain killers. Save some minor itching in the evening, I can get a good 7-8 hours of uninterrupted sleep. This has helped greatly with my outlook on the whole situation. I feel like now I'm on the other side of the hill looking back and thinking, it was possible, thank goodness I'm close to the end.

My skin has greatly improved, face and most of my torso shows signs of scarring from where the skin used to be raw and peeling. I still do produce more skin than a normal person but this has greatly reduced and my room is just slightly dusty and I can actually go a couple days without frantically vacuuming. The texture is fine enough where no one can really tell I have affected skin. It's only obvious if I try to bend it and the lack of elasticity is still very evident. It's like soft elephant skin :P

My skin is no where near perfect though. The areas that spent a lot of time open and weeping are still clearly thinner than the other areas and similar to a cut or scrape, this skin will need time to return back to normal. The color ranges from light pink, where the skin is the youngest, to slightly hyperpigmented, where the skin is starting to heal over. But overall, if I squint, it's close to normal color.

The only real trouble spots (by that I mean still flaring) that now remain are my wrists, which are improving every day, back of my knees and the tops of my ankles, particularly my left one. Even in these spots, shedding has reduced substantially, not much oozing occurs unless I over scratch. I shed these areas in the shower after the skin has softened and they last a good 12 hours before I have to dust flakes off my clothes or anything. AMAZING.

Taken 10/6/2013. Click to see the texture. Left ankle has significant elephant skin, redness, swelling compared to right. Current state is approximately the same.


For the past month, I've gone back to trying to eat less indulgently and I've gone back to working out regularly. Hopefully I can shed the pounds I've gained during this debacle (a total of 10 lbs so far. yikes.)

It's great to be concerned about regular life things again. I've slowly started to wear makeup again on Fridays but oddly enough, I feel like it's less me than before and often opt for the bare face look these days, perhaps with a touch of eyeliner.

I've even started drinking again. Not as heavily as the party girl version of me, but still a handful of bottles of beer per week. My skin feels dry as a result for a day but it's nowhere as devastating as before.

Anyway, for those of you starting your journey, just hang in. There is an end. I'm glad I'm seeing the light at the end of the long tunnel. There will be a bit of time to go before my skin is completely healed but I'm already very happy with the strides I've made and can't wait to see more improvements. Heal on my friends!

Anomaly advanced... Dots, dots and more dots: pic update Sept 23, 2013

I mentioned in my last post that I had dots forming on my right leg and I had slept it off; however, a few days later they had advanced and spread all over my right thigh, concentrated in the area my skin had been burned. Then started showing up on my left thigh and my lower back/love handles. Today they're still in those aforementioned areas and it's slightly scary. It kind of reminds me of what early stage eczema herpeticum looks like, when the blisters haven't opened up yet. It's been like this for almost a week so I don't know what it is. But it's just not going away.

My current approach is just to cover it with clothing and pretend it's not there. So far it's working but by the end of the day I'm definitely feeling itchy in these spots. Not sure how I'll handle it if it spreads further but I'll worry about that when I get there. 

This is definitely different than my TSW skin on the rest of my body. Instead of patches of scaly and delicate skin, it's just bumpy, firm and distinct. 

Leg pics today: the patches have darkened to a brownish color. Perhaps a sign of healing? second pic shows my love handle and the extent it has spread. 

Leg pics yesterday: the patches were concentrated on the weakest skin on my leg, where it had been burned 5 months back. But dots were all over the leg as well. Perhaps a little less raised than 2 days ago

2 days ago: You can really see the texture of the bumps here, all over my leg and this texture was spread all up to my butt and lower back. The dots were most prominent in texture on this day and quite itchy.

Has anyone experienced bumps like this? Is this normal TSW or should I be concerned about a viral rash? I'm not going to take any action unless it spreads and I'm hoping in a few more days I can ride this out. 

4 months down! Monthly update + skin anomalies

This 4th month has flown by. At the beginning of it, I flared pretty badly but since then, I've been leveling out. Since my last post, I actually managed to maintain that good skin condition. I've been ridiculously over the moon the past week, almost always smiling and giggling like a school girl at the tiniest funnies. I'd say out of character for myself as I'd describe my typical mood verging on "emo". It's really been amazing to taste what normal life is again and not have to worry every minute about scratching my skin to bits.

Today, I feel I may be on the verge of a flare though. I was impossibly itchy last night. Back of hand skin started to swell a little and as a precaution I wore a long sleeve shirt w/ thumb holes to bed.

As some of you may know, this whole journey started when I had burned my leg with nearly boiling water. I lost about a third square foot (about 300 sq cm) of skin on my leg and it took a couple of weeks for all the skin to reform. This is back in May. Since then, it's still been discolored, even though the skin texture seems to be normal. I always assumed my skin here was already 100% healed, despite the color, but last night it was really acting up. I don't know what the trigger was but that entire area started getting super bumpy. I was worried it was herpeticum and popped two acyclovirs in case but I didn't have sores anywhere else so I was probably overreacting. In the end, it just seemed like hives and luckily it wore down overnight.

Brown edges indicate the edge of my burn. White skin in center was where the skin fell all the way off. 

Hives formed on youngest (weakest) skin. You can see my TSW skin on my left leg's inner thigh.

No, my leg isn't a triangle. Just wanted this angle to show the bumpy texture.
Almost looks like a rectangle sunset :)

This little skin anomaly was just a reminder that even though my healed skin looks normal, it might still be sick in the microscopic layers that we can't see. The same is true with Topical Steroid Addiction. Though our skin may appear healthy, we know all too well that the negative effects are not visible to the naked eye until we start the topical steroid withdrawal journey. It explains to me why even though we appear healed, we still flare again and again. But eventually we will get there. 

Happy healing everyone. One month closer to healed!

Big improvements! My Own "Magic" Potion, and Egyptian Magic, Sweet Bee Magic Comparison Review: September 10, 2013 update

Warning: Giant Post. May contain excessive use of exclamation marks.

SKIN UPDATE!

This was me six days ago: 

And this is me today: 

Flare has been gone for the past two days and my skin has never looked better since the beginning of TSW! 

Ok, reality check, my skin isn't close to healed yet. There's definitely patches of what some would call "eczema" between my fingers, on the back of my hands, knees and tops of my feet. There's still some redness as you can see, but everything has greatly improved to the point where I almost feel normal again. Skin is thinner in texture, though there's still a red outline of where my normal skin stops and my TSW skin begins. I still get itch fits but my skin is strong and doesn't break under the force of my nails. 

And what's more, the last two nights I slept without a long sleeve shirt and stayed asleep!

I'm certain this isn't the end of the road but these days really reinforce that I'm healing and getting closer to kicking this topical steroid withdrawal! I feel joyful on these days where it's no longer at the forefront of my mind and I can't wait for what's to come at the end of this. 

MAGIC CREAM UPDATE!

Since my last flare began, I decided to try to make my own magic cream. I was really feeling down in the dumps because I kind of liked Egyptian Magic after finding it at the local Costco but $40 USD for 6 oz of a cream didn't seem reasonable for my skin's needs and the alternative, Sweet Bee Magic, runs at about the same price. I had just hit the bottom of my first Vaseline jar in a few months of use and I didn't think using these would be very nice on my wallet.

The ingredients of Egyptian Magic and Sweet Bee Magic are the same: Olive oil, Beeswax, Honey,  Bee Pollen, Royal Jelly and Propolis. I read that raw honey contains the latter components already. Then I realized, I could easily make this myself. 

I stumbled upon this blog posting with a DIY recipe suggestion and on my worst flare day, I called in sick and went on a mission: To find (1) Raw Honey, (2) Beeswax and (3) Olive oil and make my own Magic Cream. I picked up olive oil and honey from Trader Joe's then found beeswax at Whole Foods. 

Took a while to carve out that pie of beeswax.

I picked up 16 oz Ball Wide Mouth Jars from Orchard Supply Hardware. They're about the size of a pot of Eucerin cream. 

The recipe is quite simple, according to her blog, 2 part beeswax, 2 part olive oil and 1 part honey.

I settled on:

5.3 oz beeswax (or 1/6 of the 2 lb block)

6 fl oz olive oil

3 heaping tbsp raw honey

I premelted the beeswax in my home fashioned "double boiler", first bringing the water to a boil then adding the jar and simmering on low heat to keep the bubbles going. I added the beeswax and used a disposable chopstick to swirl it around until it was entirely melted. Then I added the olive oil while the jar was still in the boiling water to maintain the melted beeswax. Finally, I removed the pot from heat but kept the jar in the water. I added the honey when the water stopped bubbling and kept mixing. 

Waiting for my little wedge of beeswax to melt. Note the water is barely boiling.

I kept mixing and mixing as it cooled because the olive oil tended to settle on the bottom.

Everything mixed together and cooling. Must keep mixing, mixing mixing...

Finally, my own "Magic" cream is complete.

Almost solid!

PRODUCT COMPARISON

There are a few differences between Sweet Bee Magic, Egyptian Magic and this one. First, in order of most greasy to least greasy: Sweet Bee > Egyptian > DIY. Second, in order of waxi-/balminess most to least: DIY > Egyptian > Sweet Bee. I think the latter helps the staying power of the cream and even helps it stay on when I put clothes over it. I've found that when I use my own "Magic" cream, I don't have to remoisturize for over 8 hours. With the two store bought options, the moisturizing effect wore off pretty quickly. 

Sweet Bee Magic tended to be a little bit reactive on my skin. I'd randomly find myself scratching all of it off after a few minutes of having it on. Egyptian magic on the other hand was less reactive. I really liked it which is what lead me down the DIY road in the first place. I don't know how or why but the smell of honey is more distinct in Sweet Bee than Egyptian Magic. Does that mean there's less in Egyptian Magic and we're just buying an olive oil beeswax balm? Who knows. 

If I had to choose between the two, I'd choose Egyptian Magic because it is balmier and less reactive, resulting in a slightly longer lasting effect. But happily now, I have my own to replace both of these products. 

Top Panel: Sweet Bee Magic, Bottom Panel: Egyptian Magic. Notice how just taking a bit on my finger creates some oiliness on my finger for Sweet Bee. It has a bit more shine to it than Egyptian Magic.

Final thoughts

I also bought peppermint extract and when my skin is extra itchy, I take a glop of my cream, add a drop of peppermint extract and mix. This creates a great tingling sensation to stomp out my itch. 

I'm very happy with my creation and all in all, it cost about $5USD of ingredients to make a jar of about 15 oz of product. Much better than $40 for 6 oz. I do admit it came out a bit balmy as I have to melt it in my palm before I apply. In the future, I'd like to adjust the ratio of more olive oil to beeswax. But it's really great to have found something to occupy my time while I'm at home itching away that also helps me on my road toward healing :)

flare has returned: September 4 2013 picture update

What a roller coaster ride!

Last couple of days since Sunday I've observed as my skin began its descent again back into a flare. I woke up with courser and courser flakes and my sleep began to deteriorate again. 

Finally, last night I couldn't sleep until about 4 AM a my skin was itching so deeply and I pressed my nails into my shirt to appease it. 

Well, I thought to myself, it's officially back. I was hoping it was just a fluke but unfortunately it has returned. 

This time, my knees are impossibly itchy and the most oozy so I wear long pants to bed. My neck has begun to leave blood stains over night again. And the back of my hands have joined the fray. My shoulders continue to coat with giant flakes overnight and my upper chest illogically itches; I say that because the skin looks relatively normal. 

My full body pic looks about the same so here's the back of my hands which have really matured in their flaring. They probably show the most symptoms: flaking, swelling, itching and redness, though the photo somewhat washes it out. And they're the easiest for me to photograph :)

Welcome back flare. I was expecting you but please don't get too comfortable. 

Whaaaat?? Normal(ish) skin?! -- Aug 26 2013 picture post!

Happy Monday!! Pardon the excessive use of exclamation points but today is a good day. 

It got off to a kind of crappy start as I was jolted awake at 6AM by an itch attack. My skin has been kind of calming down the past few days and I was looking forward to seeing the other side of this flare but the itch put me into a desperate frenzy of scratching all over.

I ran into the bathroom to scratch in the tub (so it catches all my flakes) and stripped my long sleeve sleep shirt off. To my surprise, what did I see but normal looking skin with hardly any flakes! 

Ok, not exactly normal. The texture is still "elephanty" (lack of elasticity if I bend or stretch it) but it isn't as swollen and the lack of flakes is really the most amazing part. There is a definite demarkation line where my healthy skin ends and my TSW skin starts but the swelling and redness are all down.

This is the best my skin has been in the last 3 months of this hell known as topical steroid withdrawal and I'm beginning to feel hopeful that there's an end to this thing. 

With that, we have pictures...

Color's a little off here, I'm still pink but swelling is down and skin looks smoother!

Center back of neck is still a trouble spot (I scratch there a lot) but normal colored skin is peaking through!

Pardon the camera stand (a vase and a glass :P) I can still tell the line where TSW skin is but wow compared to before I feel like I'm over TSW! (Overstated I know, but I like to indulge)

Hang in there everyone, there is a light at the end of the tunnel and I'm starting to see it!

Month 3 done

Today is my 3 month mark (..yay..).

Not much to update on though because I feel like I've reached a relative plateau compared to the first couple months, perhaps slowly worsening again.

Since my last update, I had a very itchy day and probably did more harm than good by indulging my itch with some serious scratching. I've started weeping again, specifically on my left shoulder/back and neck crease and face (cheeks to chin).

My sleep has been sporadic the last two days, waking up after about five hours of sleep and being unable to go back to sleep until maybe two hours later. I'm hoping this is an aberration and that I'll get back to my sleep schedule again.

Emotionally, I've felt pretty withdrawn, almost like I just want to disappear until this whole thing is over. Also quite lethargic in the afternoon even though I'm not moving much at work. Even this post is difficult to type because I almost don't feel like this thing is worth extra thought or discussion, but since it's my month update I forced myself to do it.

Hope y'all are doing well. Wishing for quicker healing for all of us.

Am I healing?????? (cautiously optimistic update)

I'm very hesitant to blog about taking a turn for the better. 

Why you ask? Well, the pessimist in me (and that's most of me) thinks I'll just take a turn for the worst the next day. 

But since I've given it a couple days and I seem to be in one trajectory, seems like a good time for an update.

Everything is better! (*applause*)

Sleep: getting 6-8 hours of continuous sleep(!!! time to throw a parade!!!). With the help of Vicodin and Advil every night, I'm able to stay asleep once I've fallen asleep. Though I still feel fatigued by late afternoon, my mental state has been much better since I've been able to catch my sleep. This is a huge coup since at the beginning I could barely even stay asleep for 2-3 hours. I'm able to go to work on time! Amazing.

Skin color/texture: In general, only pink at max! The swelling and elephant skin has thinned out a lot. Right now, I wake up with skin-colored skin. After my shower, I'm pink again because I do the majority of my scratching and skin shedding there which leads me to....

Flakes: A LOT finer. In the midst of my flare, I was shedding a ton of skin each shower and every time I took my shirt off, I could make a substantial pile more. The flakes were also quite large and visible. Now, I am shedding less and the flakes are much smaller. It seems like my skin is staying on for longer which seems like a good sign. 

Itching: Still gets pretty intense on my chest and elbow creases, especially if I start scratching. It's still a struggle recovering from an "itch trance" but amazingly, my skin doesn't rip open. Well, maybe after 30 minutes it does but I definitely have way less gashes all over. 

General notes about localization: None of the spots seem to be shrinking. Still have it all over my torso to face, inner thighs and behind the knees. Right now, my knees seem the most behind but they also started the latest. 

Ok, maybe not everything is better. My eye did swell up and was sore starting Friday, looked pretty freaky over the weekend but today it is almost gone. I feel a bit like the hunchback of Notre Dame with my busted eye and hunched over posture. I wonder if my body is just weaker against infection and so a small eye infection can catch on quick. 

I did change a few things in my routine just before my turn around but I don't know if they are what helped this improvement. I'm pretty happy with my current routine as my skin stays relatively comfortable throughout the day. I will do a blog post on this next because I think it deserves a separate one. 

It's definitely a good day and though another flare may be around the corner, I will celebrate today as a good day and a step toward healthier skin!

less red, more weeping pix

Quick photo update. A horrible night last night. Woke up with gloves drenched in ooze and blood from the back of my neck, too disgusting to take a picture. Up for 3 hours trying to manage ooze. This morning, face was red, raw and oozy. I'll let the pix tell the rest.

Face is weeping at all the raw spots. Hurts to be outside in the wind.

Back super spotty but not too weepy. Worst weeping from neck, nonstop at night.

Back of my hands are weeping like crazy. Also red and bumpy skin. Upper chest kind of weepy and very itchy. Inner thighs have elephant skin now, especially closer to groin.

My red sleeves where I've been itching and scratching a lot. Over night I made some new wounds :(

red and burning today photo update

raw skin was super oozy and painful today. 

photo is washed out a bit. but my rash goes all the way to right before my hair line. 

Those undies are supposed to be skin colored for reference. Ick. 

Hoping for better days. 

I went to a wedding!

Well, this is different.

Since TSW began I've pretty much been a shut in as much as possible. Buckling down at my computer with my water by one hand and mouse in the other, I just play hours of video games and watch TV and movies until my eyes are dry and red.

This past weekend was a wedding and as some of you may know, leading up to it, I was very anxious about how I would fare both physically and mentally at a long social event. Most of the socializing I've done has been limited to hanging out with coworkers an hour or two after work then going straight home to tear off my clothes. But here, I'd be held captive for a whole ceremony + reception.

In advance, I vetted my costume very carefully. It had to cover all my messed up skin, besides my face, and it had to be comfortable. Initially, I found a turtle neck long sleeve dress with open shoulders. My worst spot at this point was my neck and I figured if the rest of my skin was covered up besides my shoulders I could moisturize those babies and it'd be fine. Right?

Wrong. Fast forward one month and my shoulders are scratched to bits and my knees are now exhibiting elephant skin. What's a girl to do?? Well, go shopping of course. Luckily, I stumbled across a turtle neck midi length dress from ASOS. Only 13 bucks was a great investment for a classic dress that I could wear out on occasion. I chose charcoal gray because if any flaking occured, it'd blend into the texture.

Yay, my outfit was set. Now for the makeup. My skin was oozing a couple days before and I was a little worried that I'd be oozing all over during the wedding. That morning (or afternoon more like) I got in the shower 3 hours before I had to go to the event and then started to pat dry my face and apply my vaseline and cetaphil moisturizer, then zinc oxide on top to make sure any spots were wicked away. 

My face was a bit flaky that day so my choice to use a cream compact was probably a bit misguided. I used Chanel's vitalumiere compact and immediately I could tell it was the wrong choice b/c my skin dried down immediately and I looked a bit cakey. No matter, I popped on my eyebrows, eyeliners and falsies and off I went.

Only #selfie I took. I know, I look like I'm going to a funeral. But really, I'm headed to a summer wedding :D Forgot to take an upclose of the face but forehead was a little flaky. At least HFFA? lol. 

For day, I doubled up on ibuprofen and tylenol, which I warn shouldn't be done often and especially shouldn't be done if you plan to drink. My evening would be dry except for the toast where I sipped a few teaspoons of champagne. I took 400mg ibuprofen and 1000mg tylenol every 4 hrs and it kept my itch away.

I also had to take a break half way through in the bathroom and strip off my dress and shake the flakes off. The avalanche left a film of my skin over everything and when I went grab some toilet paper, it created a little cloud of skin in the air. Lovely.

One awkward moment was when I was chatting it up with some of the grooms friends, one commented that I looked cold because my sleeves were pulled up to my knuckles. "Are you a shy person?" I suppose, but really, it's TSW!

It was a beautiful ceremony and reception. The bride and groom wrote their own vows to each other and their day of celebration was really touching. There were tears shed during the ceremony and reception and it left everyone feeling warm and fuzzy inside. For the moment I was able to forget about my suffering and enjoy the present company which was nice.

Our table's centerpiece

A kid warming up the dance floor

Finally, I'll leave you with these pics where you can kind of see my face. My expressions are a little muted b/c my skin is tight but I was glad I looked okay for these goofy pictures.

Photobooth! My friend's face is altered for his privacy. 

It was definitely worth it to get out and about for the day and enjoy company and good food, away from my dark skin filled room. If you're able to escape it for just a moment, you should. Though the next day I was super flaky and itchy, I just thought back to the previous day and how great it was to hang out with friends.