Wednesday, January 22, 2014

How things are going + a few of my tactics for survival.

Well, it's been 24 days without steroids and I am feeling okay.  Better than I expected, actually. Compared to the last time I attempted TSW (about 1.5 years ago), this time seems so much easier for some reason.

I feel like moisturizing is imperative for me.  Last time, I went about TSW without moisturizer (as a few TSW-ers were touting the benefits) and it was absolute hell.  The dryness & cracking was absolutely unlivable.  This time, I don't care if moisturizing slows down my healing (as some people say it will).  I want to be able to get through every day as comfortably as possible!  I work two jobs and absolutely NEED to be able to look & feel the best that I possibly can everyday.  I was not able to work or do anything last time when I wasn't moisturizing.

My moisturizer(s) of choice: after a warm shower (twice a day), I slather my entire body in coconut oil and then seal it in with Aquaphor (however, I do not use Aquaphor on my arms, which I'll explain).  In the past, I tried many other moisturizers, but this seems to work best (and is the least irritating) for me.  It's REALLY greasy, though, and I have to wait about 20 minutes until I'm able to put clothes on over top of it (the clothes still get very greasy though :( .)

Occasionally, I'll retouch my skin with either coconut oil or jojoba oil when I feel my skin getting dry throughout the day (particularly my face & neck).  My arms are covered in bumps and moisturizing them actually seems to irritate them more, so I only use coconut oil on them twice a day (and definitely not Aquaphor).  It usually helps to open up the skin pores with a little bit of warm water even if I'm just touching up a small area of skin.

One other "moisturizer" that I think is helping me: after my evening shower, I wrap my head in a towel and leave it on my head until I fall asleep.  If possible, I try to keep the towel on my head all night as I sleep.  My hair stays wet for most of the night.  I feel like this extra wetness on my head helps me stay moisturized.  (I could be way off base here, but I honestly feel like it helps with the dryness).

I also sleep right next to a humidifier.  My hygrometer currently says that the humidity in the house is 16%!  That's really low and really dry!  A humidifier is absolutely necessary.

Help with the itch: I've been taking Atarax (aka Hydroxizine) 10mg multiple times throughout the day.  It's drowsy effects only catch me off guard occasionally nowadays, but it generally isn't making me feel sleepy anymore.  It doesn't take the itch away entirely, but it definitely takes the edge off (thank God)!  I don't really like the fact that I'm dependent on this drug, but.... gotta do what it takes!  I know that I absolutely cannot stand the itch if I don't take it.  So, I'm taking it and not worrying about it!

Here's two photos from today:

The bumpies and pimply-looking/rough texture is mostly gone at the current moment.  My chest is smooth-feeling but still flakey.

My hand looks... like a 90-year old woman's?


  1. Well, it will be very interesting how it goes for you this time around via moisturizing. Do keep us informed! I will be very interested in seeing if you have the same opinions 3 months from now.

    1. Thanks, Dan! We'll see! Right now, this seems to be working for me very well. A few months down the road? Could be a completely different story, I suppose! I'm just going to assess each day as it comes and do what seems best for myself. I see, from your blog, that you're very adamant about not moisturizing. I'm open to pretty much anything (and will openly reassess things as my healing progresses). I just know that I am living much more comfortably at the current moment because I'm using moisturizer. As a woman who works with children, I am not comfortable with my face being all cracked and flaking off everywhere. I'm much more comfortable (emotionally & also physically) with smooth pink (albeit irritated) skin.

    2. Stacey, in your last post you said "The odd thing is that, ever since I went back on steroids, the eczema is affecting mostly my face, neck & arms. I NEVER had eczema on my face or neck before. My legs (which were my original problem with the leggings) are almost completely clear." That is called "steroid induced eczema". My derm also told me I had atopic dermatitis. I told him to stick it. I never had rss. Steroids cause steroid induced eczema, and although they offer temporary relief, they only make things worse in the long run.

      Did you start your last attempt at TSW via zero moisturizing from the outset? I would love to hear some info on how long before you did MW and how you complimented the MW via other methods before giving up on it. If not moisturizing your skin and the dryness and cracking was such hell, why didn't you just use moisturizers instead of going back to the steroids? I only ask because most people who do MW have experienced both ways, and most never go back to moisturizing. There are easy ways to heal the cracking you experienced.

      One of your moisturizers of choice listed above (Aquaphor) has known toxins in it's ingredients that have been shown in clinical studies to destroy the skin barrier, among other things. As for coconut oil and other safer alternatives, see

      If moisturizing works for you as compared to not moisturizing then by all means moisturize. But for myself and most others I have known, going through TSW via no moisturizers has been a much more comfortable journey. Continuous moisturizing keeps the skin from getting stronger so when you scratch it falls apart easily. But not moisturizing allows the skin to strengthen quickly comparatively, and it saves a lot of grief. Always best to not take anyone's word for anything on health issues and do your own research so you can make your own educated decisions for yourself and your own situation. You're the one that's going to live with those decisions. Just my opinion. Not trying to push you in either direction. Just suggesting you read and learn all you can about how the skin functions, and especially on the effects of moisturizing on hypersensitive skin during TSW.

    3. Hi Dan, thanks for your response.

      In answer to your questions: Yes I started my first TSW without moisturizing. Why did I go back on steroids and not simply start using moisturizer? After 2 months of TSW, I went to see a doctor who was recommended by Dr. Rappaport, himself, and that doctor told me that I didn't have TSA. Although I was unsure of his diagnosis and was very hesitant about using steroids again (because I had seen everyone else's stories about addiction), I felt desperate for relief at the time. I had been bedridden for 3 weeks and could barely know what it's like.... can you blame me? A doctor who was supposedly "on the same page" as Dr. Rappaport was telling me I didn't have TSA... I listened. At this point, I'm not willing to go back on steroids, despite what any doctor might say, but I wasn't at this same point back then. I didn't know! I can't change the past.

      I will, of course, continue looking into the moisturizing issue. At the current moment, I'm just trying to survive and feel comfortable. Feeling my skin dry up and crack all over is NOT comfortable (physically or emotionally), so I'm avoiding that right now. My decision might change at some point, absolutely. In fact, I'm barely moisturizing my arms (just some coconut oil which dries out after an hour or less), so that might be insightful for me to watch how my arms heal as compared to my face/chest.

      I'm fully aware that Aquaphor isn't really a great option (toxicity wise). I'm going to switch over to palm shortening, starting this evening, and see how that goes instead. I will definitely feel better about using a more natural emollient.

      Thanks for not "picking on me" about this. I certainly don't want to get myself into any arguments about ANYTHING surrounding this experience. The physical suffering is bad enough! And, I'll be the first to admit, I don't know anything (!). We're all just trying to get through this the best we possibly can. I appreciate your insight and will absolutely examine every angle as I'm able, including moisturizers!

      All the best to you as you continue your own healing, Dan. I'll be following your blog and your progress.

    4. Stacey, not sure where that came from but I have no intention of picking on you or anyone else. And I certainly don't want to argue with anyone either. I am not the moisturizer police lol. I was just curious as it helps me understand. That is a shame what happened with that other doctor. I have little respect for Dr. Rap anyway and have even less now. I don't blame you for falling victim to their bs. Most doctors I have ever met didn't know their ass from a hole in the ground. I don't agree with the idea that some get addicted to ts and some don't. As I don't agree we are different as many suggest we are. I also don't agree that we should avoid the sun early in our tsw. I exposed myself to the sun multiple times every single day from day one throughout the entire summer and it helped and not hindered my healing.

      I'm happy to hear you are switching to the white palm oil and wish you a speedy recovery.

  2. Hydroxine is an absolute life saver isnt it! Keep it up you're doing amazing x

    1. Oh my goodness, Sarah, I simply couldn't survive this nightmare without it! Thanks for the encouragement!! :)

  3. I have been steroid free for 26 days... I have an old prescription for Hydroxizine and have been contemplating getting it filled to help with my itching, especially at night... You've given my a lot of great ideas, I think tonight I will try sleeping with a towel on my head, to see if this helps with my scalp peeling. Thanks for posting, I will be reading! It is so nice to know I am not alone. :)

    1. Hey Meghan, let me know if the towel-on-the-head thing works for you. I don't have any scalp peeling, myself, at the moment, so I'd be interested if it helps with yours at all. Let's stick together throughout this process. Since we're basically at the same point, it will be interesting to watch our similarities and differences. If you end up getting some more hydroxizine, I hope it helps! Over the past few days, it's effectiveness has worn off a bit for me. I'm thinking of switching to Benadryl for a few days to see if that works any better at the moment. Constantly adjusting and readjusting seems to be norm. Best wishes to you!