UPDATE: Healing from Topical Steroid Addiction

It's been almost a year and a half since I began this journey. A year ago, the worst was still yet to come and on the other side of that experience, I can only feel grateful that it's (mostly) behind me. 

My skin is now manageable in the sense that there are no devastating itch, ooze or flare attacks, just small cracks here and there due to heavy use during chores. 

What's my current routine? 

I'm still not using moisturizer and taking dead sea salt baths as detailed in this post. I'm up to 4 days between baths, washing my hair when I get a little grimy. Still using taping for broken skin management as detailed here.

The difference now is that I could take a shower if I wanted to but my skin will be a little on the dry side. As for moisturizer, whereas previous lotion use would result in red inflamed skin, I can now apply it without incident. I'm still keeping it to a minimum so as to let my skin's oil content recover itself. 

Speaking of oil content, I'm also breaking out again! Yes that is excitement since it means my skin is oily enough to trap dirt and grime again. 

All in all, everything is progressing slowly but nicely. Here are some progress pictures. 

Feet still have remnants of damaged skin but have not flared since last reported. 

Upper lip cracks are pretty persistent, but slow progress is visible. Jawline still has flakes sticking too it, which I can scratch off without breaking my skin!

Finger cracks are finer and skin is still poofy  around knuckles. Perhaps plenty of white blood cells are there doing their job?

HEALING: Using Medical Tape to help skin repair, and progress pictures.

It's been a while since my last post because I don't feel like much has been happening. Though, there is a progression and I figure I should document it. Since the last post, my finger skin and face has started to "flare" more. I see it as a positive sign because before my feet got better, they got worse and I think it's just the skin turning over until good skin finally appears. Patience has really been key to survive mentally because if I got too anxious to heal, I'd get quite dejected and frustrated. 

My procedure continues to be dead sea salt baths and moisturizer withdrawal. I tried showering early September and my skin was not happy. It just became slightly more dry and flaky until my next dead sea salt bath and then returned to normal. 

A new technique I continue using is Taping.

Taping continues to be a way for me to cope with cracks. 3M Millipore tape or Nexcare Paper tape (I purchase these from Amazon or Drugstore.com) are the only brands that 1. BREATHE and 2. are flexible. Breathing is VERY IMPORTANT because if the tape does not breathe, the skin sweats underneath and loses its integrity and slips off. I tried to save money and buy CVS brand and it wasn't breathable at all which caused my skin to peel off. Flexibility comes into play if you use your hands a lot for work or chores. These tapes are flexible enough to withstand cleaning, moving, etc which I have been doing during my move. 

This month, I also had to move which involved lifting heavy boxes with my cracked fingers and taping is what kept my skin together. If I did not, cracks would form and the next day my hands would be in bad shape.

Here's the general guideline I use for taping:

1. Skin must be dry, for the most part intact. This technique is NOT RECOMMENDED for oozing skin. Good for late stage TSW sufferers.

2. Hold crack as closed as possible and apply the tape.

3. Leave on for at least 8 hours (the longer the better)

4. Crack should be somewhat sealed, if not, repeat taping until it is.

Note: Tape will leave some residue. If so, gently rub glue off in the direction of any cracks (example horizontal crack, rub horizontally) so it does not disturb the crack. I have found benefits of taping far outweigh this issue. Also, if a bath will be taken soon, residue readily comes off in the bath water.

Tape can also be used to protect delicate skin, especially when you are doing arduous tasks that might cause the skin to crack. Also note that even though a crack is sealed, it might not be fully healed so additional taping helps hold the skin together until it is healed. As a precautionary measure, I use it preventatively on fingers as I'll show below. 

I cover the problem areas with tape to protect them from daily wear. I work in a scientific lab so cover this with gloves but change them often to prevent sweat build up. I use Micropore tape in "Tan" by 3M which is not too obvious unless you are up close. Here, my pinky first knuckle, ring second knuckle, and middle finger whole finger on the right hand and index finger second knuckle on left hand are taped:

The actual condition of my skin: Very scaly on my pinky and middle fingers of left hand:


Right hand is pretty much healed, Just pesky index finger spots and a slight patch on ring finger remain:


Left hand close ups, I often tape these at night:

Foot skin continues to be closed and the "affected" skin is ever so very slowly shrinking, e.g. before, affected area stretched to right pinky toe whereas now it's at the ring toe. 

Face skin is also "flaring". Delicate patches along jaw line are very pink and feel scaly. Upper lip often forms a crack, though today it looks okay but very scaly. A crack often forms on the seam of the upper lip in the valley of my cupids bow so I often tape that over night and by the morning it heals okay for me to not look like I'm dying. Under my chin, flakes seem to form a lot which I have to scrub off during baths:



So here we are, 1 year and 4 months in, still dealing with symptoms, but nothing is devastating my life. I can sleep full nights and don't have to change sheets manicly now. But it's still a struggle trying to stay positive through this time, as I still don't feel and look great. Keep calm and heal on!

SKIN: I have it, almost + !! BONUS body part pictures !!

Geez, I'm awful at this updating blog thing. But here I am with a photo update post. I'm on month 14.

Honestly, I'm just slowly getting better and it really feels great. Besides a tiny set back with some eczema herpeticum on my cheek, everything seems to be getting better.

Ok, I have snuck moisturizer on my legs (cerave) and face (serum) once, but to be honest, it just made my legs feel greasy and did nothing to benefit my face so I stopped.

Besides that, I'm still sticking to this routine of dead sea salt baths, moisturizer withdrawal, using surgical paper tape to close cuts, and  using masking tape to remove extraneous flakes. Yes, you read that right.

Here are the updates --

Sleep and itch are non issues. Seriously.

Face: 

Still splotches of flakes, especially around jaw line and flakes/cracking above lip (below). Lips quite chapped but no chapstick/vaseline/moisturizer allowed! That thing you see on the left (your right) cheek is a spot of pesky eczema herpeticum that I'm slaying with large doses of antiviral and lysine.

Hands: 

Right hand still good besides some tiny spots on my index finger knuckles. Left hand all knuckles are still quite swollen, dry, flaky and cracked. On bad days, I swear by micropore tape (the Nexcare stuff) to hold my skin together.






Feet:

In the following pics, Top is left foot Bottom is right foot. Holy crap is my left ankle better. As you can see, the elephant skin is still worse on my left ankle than my right but compared to THIS nightmare, uhm. YEAH.

And, can we again say SKIN IS ON MY FEET. What the crap. Celebration parade time.




Limbs:

They are really doing fantastic. Arms look great. A little discoloration on back of knees from a few patches of dryness. Creases are reminiscent of elephant skin, more so in legs. My knees are a little itchy because I'm sweating so damn much back there so I am probably keeping that little hole on my right knee open. But how can I complain (besides the slight weight gain from emotional eating)?

INDEPENDENCE: Quick photo update of healing

Happy July 4th! Independence Day was great for me. Gorged on chicken wings, ribs, clams and even some watermelon, a notorious allergen for me. 

In addition, I felt it was a celebration of independence from steroids, moisturizer and all things skin. My skin has continued to be on the mend, with no oozing and all closed skin! Besides the baths I continue to take every 2-3 days, not much thought goes into my affliction. 

Seems my fingers are now starting their healing process as they are a bit more swollen than before, after my feet have finally closed up and the skin continues to become more fine. My left ankle's elephant skin barely remains.

All closed up! and I've been scratching this skin. 

Tiny elephant skin remains on left ankle. Rest of skin still crepey but smooth. 

Starting to see fingers swell up more and turn over skin a lot. I see this as the healing process kicking in. 

Right side not as bad just like feet. Pretty much all healed except index finger! 

Itchy itchy fingers!!

Middle seam crack has healed but tiny ones remain. Patches of pink all over chin and cheeks but getting better week by week. Heal heal heal! 

Almost 14 months and what a ways I have come. Hope you all are enjoying your summers as well. 

VIRAL: My skin caught a cold, then gave it to me. I live to tell the tale. And share pictures.

It's been 13 months!!! I didn't post a year post because I was just so frustrated that I was still going through this. And tbh, I still am. I was feeling pretty positive about the path to healing with my dead sea salt bath/no moisturizer routine. Until this happened:

So end of April, my feet caught a cold. What I mean is there was definitely something viral going on. You can see those patterned blister type things especially on 4/30. My skin started to lose its integrity then exploded in tiny pustules and eventually just ooze. 

Then I got sick. The first week of May, I caught a nasty cold and was out of work for a week. Slight chill/fever, runny nose and congestion. I thought to myself, thanks feet. Assholes. (Note: I'm fully aware my feet didn't give me their cold virus. Most likely, my immune system was just weakened from fighting the open skin infections that I was more susceptible to something)

5/16/2014 rolls by which is my one year anniversary of dealing with this shiz and I'm just miserable. Didn't feel like blogging about it and so onward ho I went. 

At this point, most of the foot was scabbing over but ooze was still seeping out of the seams. To deal with this, I went back to my trusty Nexcare paper tape and literally taped my skin together. 24 hours later, old scabs peel off with the skin and delicate new skin appears. Ideally, I'd keep it on as long as possible though with my (nonexistent) will power, I managed a whole day and a half and that gave the best results I'd seen. 

Tape to hold my skin together? check.

During this time, I had to travel to a bachelor party and then a wedding and let me tell you this shiz saved my life because my feet were still oozing without the help of the tape seconding for my skin. 

My feet didn't heal up completely until 6/8 where you can see the skin is finally covering everything and HOLDING THE LIQUID IN. Holy crap, I could wear socks again without worrying about the liquid immediately drawing out of my feet. Fan-freaking-tastic. 

Below are the pictures which show the progression. And let me tell you, thank goodness I took them. Had I not, my head would have probably been exploding by mid May when it felt like nothing had changed, though through the pictures you definitely could see a difference. 

4/27

4/28

4/29

4/29

4/30

5/1

5/2

5/3

5/5

5/8

5/9

5/13

5/21

6/8

And here we are today. My feet are holding liquid in, though surprise, surprise, the skin is not healed. It is just dry and flaky. 

Continuing problematic areas:

Left hand is good... till you get to the fingers!
Right hand is A-OK, just a tiny blemish on index knuckle

My left hand has continued to have elephant skin on the 3 outermost fingers with constant cracks forming at the knuckles, though my right hand is OK. 

My lips are insanely chapped and I've resorted to dropping fish oil on them when I get desperate, but for the most part I let them remain dry. Definitely avoiding petroleum jelly because when I have used it, my skin immediately weakens and gets even more insanely chapped and cracked. Yup, red and bold because it's that serious.

On the bright side! 

My torso, and arms are great. Just a touch of dryness but I can wear T-shirts and look "normal". I donated all my thumb shirts! Exchanged them for cotton/spandex V neck t shirts.

My legs are just quite little flaky but no real afflicted areas.

Itch and sleep are a non issue now. 

Besides my foot fiasco, my skin isn't really the center of my life. I'm still not back to my normal routine but I can hang out, drink, eat without worrying about having itch attacks etc. So life is decent, just gotta keep chugging along. 

MOTIVATION: Living vicariously through my future self!

For this monthly update, I decided to do something different. Things have been SO MUCH better thanks to moisturizer withdrawal and dead sea salt baths. If you'd like to know my current routine, you can check out my previous post about dead sea salt baths. My skin is slowly making progress which I'm quite pleased about.

Yes, my face is still flaky and I am still stuck in tight cotton clothing only. However, because of the improvements in swelling, oozing and itching, instead of wallowing in depression about my current condition, I'm able to embrace the future with open arms (corny, I know) and plan my comeback. Please excuse me while I self indulge just a little.

The awesomeness that is my life, aka things I can do now that TSW is winding down:

• Not washing my sheets for a week -- But what about the flakes??? To which I respond, what flakes? 
  
  Mind blown.
• Dieting
  Prior to TSW, I was a bit of a diet and exercise junkie. I have ultimately been working toward my target weight of 125lb and TSW just threw a huge wrench in it. As a result, I was forced to stop exercising. I must have been bedridden for a good 2-3 months. As some of you may have experienced, being hungry just set off the itch centers like crazy. I responded by always being full. Needless to say, I packed on the pounds. After my TSW seemed to be winding down in November of 2013, I took the chance to crash diet, but promptly was hit in the face by another flare and the story repeated.
  I'm back on the diet again, since I'm barely itching even when I'm very hungry. Definitely looking forward to hitting some big goals this year!

My weight history since 2010. Doing well through 2012, then bam, uncontrollable "eczema" (signs that my skin was addicted to steroids) into TSW, starting in May 2013. 

• Exercising
  DYEL, bro? Well, I did until this whole skin thing. This was one of the biggest withdrawals I had. Rather than hitting the weights, I was forced to endure my body wasting away into a fat blob. Well, NO MORE. I'm back in the gym about 3 times a week, and quickly regaining my strength! Of course, I'm listening to my body. No exercising at the expense of my skin (for example, cracks on fingers deter me from lifting heavy). I've also picked up yoga: it's a great way to workout at home and let my mind wander away from skin troubles.
• Wearing nail polish
  Gel nails are the bestest! I still am scratching up a storm at times but my skin is strong enough where I can afford to grow them out a little. So I apply an at home gel manicure thanks to the NaiLuv kit. It sticks to my nails for at least a week and I don't have to look at my naked nail nubs anymore.
  
  
  Don't mind the thumbshirt.

• Straightening my hair -- Yep, I can actually go back to looking presentable again. 
• Buying dresses, gym clothes, makeup -- I am a bit of a shopping junky and being able to even shop for non TSW related items helps me look forward and not back. Though I can't necessarily wear/use these items today, it's nice to know I will be able to soon. 
• Posting on Instagram -- random as it may seem, it's my way of reconnecting with the world. Posting about the small things in life makes me appreciate them that much more. 
• Drinking -- no more itch attacks after consuming (copious amounts of) alcohol! I'm not really overdoing it but it's awesome to be able to enjoy a draft on Friday with some buddies!

Moving forward with caution. 

I expect that I will still run into bumps in the road but I am working on appreciating the moments I have now and planning for the future. 

I am making sure to not do anything at the expense of my skin. For example: I am a self proclaimed makeup addict but I am still keeping my skin free of such items till I am sure it can handle it. I did try mineral makeup and it doesn't seem to irritate that badly, but will still err on the side of caution until my skin feels TSW free. Instead, I am finding alternatives to outlet my predisposition toward vanity such as hair styling (without skin irritating products!!) 

What are the little things that remind you of your progress? I'd love to hear!

Happy healing!