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.