Monday, March 21, 2016

PAIN: Flare has no end in sight

Well this is unfortunate. I was so sure that my hell was over but it has returned to haunt me. Currently, my face, neck, shoulders, upper back, upper chest and arms are all flaring. No oozing but painful red dry flaky swollen skin is all over.

I had forgotten the pain that comes with topical steroid withdrawal and currently my dead sea salt baths are very rare (1-2 per week) and yet each one stings worse than the last. I'm still not moisturizing as the one time I did, my face turned into a desert quite rapidly with thick itchy flakes.

My sleep is now quite disturbed again and I resort to pain killers and benadryl to catch maintain my sleep schedule.

I even had to revive my topical steroid withdrawal wardrobe to cover my skin from even stagnant air. Unfortunately less and less companies are making fine cotton spandex  clothing so I'm constantly on the hunt for some more soft pieces of clothes.

Life day to day feels difficult again. My shoulders hunch from pain and my movement is limited. Most frustrating since I had just revived my workout routine and must put it on hold again. Those desperate and sad feelings are back periodically though most of the time I still trust the process despite the pain and discomfort.

I hope everyone out there is healing and I'd love to hear about those of you that have healed. I can't wait to join u guys soon.

Wednesday, March 2, 2016

SURPRISE: I'm flaring again

Well,  I thought it was over but the end of February has been killer. My upper chest, upper back, arms, neck and face have been flaring the worst I've experienced in a year. I've been revisited with hyper shedding skin and the pain. Oh the pain.

I feel like I'm slightly less panicked and more able to cope with the symptoms now: pain killers for pain, lint rollers and constant wiping dead skin cells away, no showers baths or lotion for as long as I can take it, and a constant reminder to myself that this is just a temporary set back.

The following pictures were taken 2/25 after a bath. I started flaring maybe a week and a half before that. Today, I'm still in about the same state but I've avoided bathing so my skin feels marginally thicker.

This flare makes me think of the "first in last out" model of healing. I definitely started in my upper torso to face region so hopefully this is a sign of the topical steroid withdrawal burning out where it started. In any case, I look forward to being rid of this flare soon!









Stay dry, 
Megan 

Friday, January 1, 2016

RENEWED: 99.999999999% healed!

I'm renewed in the year 2016! After a long journey since May 2013, I can finally say my topical steroid withdrawal journey is behind me!

Not only is my skin no longer a daily issue, but I can do my nails, diet, exercise, use products, pretty much without considering the repercussions.

Since my last post, I have:
  • grown nails
  • started a diet/exercise routine
  • worn lotion on occasion
  • worn makeup 
  • gone on dates
  • switched jobs
  • lost 10 lbs
  • accepted myself with good or bad skin 
I can't believe how far I've come, looking back at even just the most recent post (6 months ago). And I'm really happy to be where I am, and look at the new year with optimism for a new beginning. In my 30th year, I'm feeling energized to pursue all the things I never did before TSW and I'm pretty grateful that I went through this because it has truly been transformative both inside and out.

I want to thank all the TSW bloggers for their support and suggestions, especially Dan for urging me to go moisturizer free and trying dead sea salt baths. They were truly the ticket when it came to improving my quality of life as my skin layers restored.

My current routine is still very much similar to the one covered here: http://steroidfreeskin.blogspot.com/2014/04/update-dead-sea-salt-baths-for-dry-skin.html

Here is my current skin routine:
  • I take a dead sea salt bath every 3ish days, and shampoo with any shampoo. My skin is strong enough for me to rub off flakes now, even on my fingers pictured below.
  • My face doesn't need moisturizer.
  • I wear eye/eyebrow makeup but rarely use foundation. I remove eye makeup with witch hazel.
  • I use Jergen's bronzing glow on my legs when I want them to look nice, as there's still residual flakes, but typically this is every 3-4 days.




As my skin got better, I just realized I was living life again and thus became terrible at updating my blog, but I wanted to let you all out there know where I stand, in case you also need hope that the end of TSW is around the corner, so close you won't even realize it when you're there! Happy new year to all, and stay dry!

Megan

Tuesday, June 23, 2015

ANNIVERSARY: a flare to begin another year of topical steroid withdrawal

My two year came and went this May and things have been calm. I'm slowly transitioning out of wearing leggings 24/7 and reintroducing non-cotton clothing back into my life. 

My routine has been taking showers (no soap) 2-3 times per week and NO LOTION! And my skin looks normal, albeit a little on the dry side. The last two pictures are my hands with NO LOTION at all. Note how my unaffected skin doesn't look ashy or dry. 

My skin is pretty much all healed except for my left hand, right ring finger and bottom half of my face. The facial skin looks pretty normal but does shed more than the rest of my skin and gets flakes once in a while on the cheeks and chin and upper lip areas. My hands look like typical eczema and just kind of persists with very slow improvement. 

Until............

Last week, the skin on my fingers just started disintegrating. It felt spongy and was easy to rip off and started oozing liquid. After the first few days, I resumed Dead Sea salt baths and it seemed to help seal over the wounds (see Friday's picture below). This again has shown me the power of dead sea salt baths as I had tried coating my fingers with antibiotic, Penaten, anything that would make a dent. It wasn't until I used the dead sea salt baths that my skin began to stop oozing and turn around.




Sunday, 6/14/15




Tuesday, 6/16/15


Friday, 6/19/15


Tuesday, 6/23/15

So flares do still happen, just not the devastating ones of yesteryear. I will continue taking dead sea salt baths for the time being but as you can see the skin on the fingers has healed over and very manageable. 

I still can't emphasize enough how much not using moisturizer and taking these baths has impacted my journey. Moisturizer draws out the ooze more, I believe, and keeps the skin in a fragile state. I definitely noticed it this time around, when I was trying to "protect" my skin by using antibiotic creams. The ooze would just break through and keep the area inflamed. Staying dry really forces the skin to stand up for itself, build up its layers and return to normal. 

Until next time, stay dry! 

Thursday, February 12, 2015

CHAPPED: A brief respite, and a flare.

Well, it was good while it lasted... Month 21!

Between mid December and mid January, I was doing well, skin-wise.

So well, in fact, that I may have gone a little overboard. I started wearing makeup and moisturizing my face. My skin felt smooth, but perhaps was still a bit weak. Well, I may have jumped the gun on that one b/c a flare began the last week of January and has still not subsided.

At least there's no terrible itch or lack of sleep. It's just really peely skin on a few of my eczematic spots of my hands even with slight ooze on one finger and my lips, OH my lips. They have just been terribly chapped for the past few weeks. They would heal perhaps for a day or two then go back to being super chapped again. I'm getting close to a chap cycle and hoping it will subside after this.

How am I handling this? I'm back to my dead sea salt bath every 2-3 days as needed (It feels SO GOOD). And NO MOISTURIZER. I think this was my mistake in jumping the gun on my facial skin before it was ready. The thing is, my forehead is just fine, as it was not an area affected by TSW. But the TSW affected areas (cheeks, chin, lips and upper lip) are really not happy with me and are super flaky. At least I'm not panicking and I just have to continue to remind myself not to get too excited the next time I get a turn around. 

I'm fairly certain this flare/setback is a result of me moisturizing too early. Why? My legs and feet are just fine. I moisturized very minimally in these areas whereas my hands/face where I got overzealous in moisturizing are really punishing me right now. 

Here are the pix. 


3rd finger is so unhappy! There's a bit of ooze coming out of the cracked upper knuckle.


Right hand has always been ahead in healing, but still shows a sign of a flare on the ring finger, it was oozing 2 days ago but I've been keeping it taped up for the most part so it's healing nicely.


Woe is me. The entire outline of my lips is a mess. With cracks and thick skin, it's hard to even eat a large bite! It looks like I got a lip job from far away. HAH. My jawline has tender flaking skin which shows pink very easily, as is the case with my cheeks. You can probably tell I was just scratching my cheek, with that tell tale piece of white showing through. My upper lip skin has just begun to heal from being cracked all week.

Moral of the story? Don't moisturize before the skin is 100% healed, if at all!

Happy healing and stay dry!


Monday, November 10, 2014

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?

Wednesday, September 17, 2014

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!