Forced Bravery

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It’s hard enough looking at the reflection in the mirror. I think I’ve finally come up with the courage to post photos of my current condition. Sliding it out for the world to see feels more like forced bravery than fearless conviction. But I believe that if you put on a smile, cheer will follow. Here they are…

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Left side of my neck and face. Thickened and weeping skin. Yum.

This is the left side of my face and neck. It’s looked like this for at least a month now. I have lumpy lymph nodes on my neck where the large blotchy rashes are located. I wrap nice Cottonelle paper around my neck to catch the weeping ooze and hide my neck. It stresses me out every time I feel something like my scarf brush against my neck or see it. So wrapping for the last week has made a difference in healing. Wrapping my neck with paper and securing it with a bobby pin has helped a lot. The skin there has a few creases and has sagged, so that the folds stick to each other and it feels icky, so I end up tending to it and it turns into a mess. It was just by coincidence that I started doing this as mom bought this Cottonelle brand toilet paper. It’s gotta be a 50-ply paper with strong fibres, so it wouldn’t stick to weepy skin like regular paper would. Now, I don’t feel the folds sticking and I don’t have to see it throughout the day.

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Perioral dermatis developed with steroid use. This is it on a really good day.

The area around my lips, especially above it, flared one day when I was approximately age 12 when I was playing with Lucky, my aunt’s Labrador Retriever, and probably touched that area. It’s been a frequent problem area since then. I’ve used anything for 1% Hydrocortisone to Protopic/Elidel to Clobestol Propionate. It has gradually gotten worse to the point that it’s permanently cracked (tiny hills and valleys from epidermal damage) and oozes when anything touches that area. It was oozing a yellow fluid and was given several different oral and topical antibiotics; it continues to be a problem. It looked like this for a good month, but went downhill last week when my bf’s stubble hit that area despite our carefulness. I’m really hoping that it will no longer be extremely sensitive after the TSW deal.

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Blotchy, thickened, weepy, tight dry face

This is what my face pretty much looks like at the moment. The affected areas are my temples, around the eyes and mouth, jawline and some of my cheeks. Makeup is my friend most days, although I don’t bother unless I’m going out, which is almost never at this point. My eyelids do this funny thing where there’s not one, not two, but three folds. I’ve heard another fellow Asian mention this on the ITSAN forums. Think it’s because the skin’s just so dry that it creates more creases than I need.

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My hands never looked like this before TSW. I never really used steroids on my hands or wrists except for the odd time when this little spot would get out of control. Working at the hospital and having to constantly sanitize them brought them to this state. Although I no longer work there, it hasn’t bounced back since then; it’s been 1 1/2 months. The skin here is very dry and thick. Think I should use my Dermasilk gloves to help with moisture retention.

Overall, you could say that things have improve in the last little while. I started TSW from the beginning of January 2013, so I’m into my third month of withdrawal. I experience some “pins & needles” itching throughout the night, but the itching usually happens when I tend to a small spot that initially always seems harmless and then the itch spreads in all directions. I have to admit that I probably scratch even when I’m not itchy. Even though the itch isn’t bad, scratching gives me immense relief, it’s almost orgasmic. I’m trying really hard tonight to keep my fingers away from my skin. Feel like I should take up knitting to re-train my hands to keep away from my body. I’ve created so much damage already and need to distract myself.  In the meantime, I’, debating whether I should buy this Calendulis Cream or EczeHerbal Ointment found in The Eczema Company (http://www.eczemacompany.com/eczema-creams-salves/) for my face as it’s been so dry lately.  Shea butter sinks in nicely but like everyone else, I wonder if there’s something better out there.

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12 responses »

  1. Thank you for posting pictures! You are a beautiful girl! Soon this will all be a memory. Btw I have the same eye problem. Dunno if it is limited to asians going through tsw, I’m mixed Japanese and white, so perhaps it could be! Hang in there! Sending you healing thoughts!

    • Thanks Pink, I need all the warm healing vibes I can get! You’re just 3 months ahead of me and it sounds like we have a similar TS history. I was on Clobestol off and on for 6-7 years and used very sparingly. But before that, I used 1% hydrocortisone since childhood off and on. I look forward to see you on the other end! Japanese and white mix sounds cool. I’m Filipino and Irish mix. Maybe the triple eyelid thing is just an Asian thing, not sure. Before TSW, I had a double eyelid thing but wonder if it’s been like that with long time off and on TS use. Either way, life will be very different from how it is now – no triple eyelids, haha.

    • Hi Mandy, ohmigosh, I didn’t realize that you’re allscreennamesgone. Wexler is a dermatologist like all the other ones. She is obviously a very smart woman, but is only doing what she was taught in school – prescribing ‘roids to skin patients. It’s unfortunate but it’s the way it is, which is why it’s crucial that ITSAN spreads the word as it will take a long time for medical society to re-learn and un-learn what they know about TS. l’ll email you soon!

  2. I know what you mean about how good scratching can feel, even when you’re not itchy to begin with. It feels awesome! But taking up knitting or something handiwork is a good idea. I knit and it’s been a good distraction during TSW. I had to take a break from it month 2-5ish since my hands were so torn up.

    • Brittany, I’m totally going to head over to Michael’s and grab some knitting stuffs, so I can start knitting scarves, tops, anything! I’m sorry to hear that you’re hands were so damaged that you couldn’t knit, at one point. It’s really important to me that I keep my hands distracted as scratching has become such a terrible habit. I know it won’t erase all my problems but it will help. Trying not to scratch is so difficult, I wonder if it’s anything like an addict trying to get off heroin or something! Do you know how I should get started with knitting?

  3. I have the triple eyelid too! But i’m straight Caucasian so it’s not just an Asian thing. Not sure if you have this as well but I have lines under my eyes as well that are much more prominent now because it’s so dry there. Everyone comments I look tired all the time. You are brave to post pictures, I appreciate everyone out there with TSW that isn’t afraid to show their face. (When my ordeal is over maybe I will post full pics that don’t have my eyes blacked out to hide my identity). Your hand/wrists look just like mine too. Wishing you a day of less itches and more healing!

  4. Haha, who knew the triple eyelid was a thing. The things that happen to us!! I’ve had very prominent lines under my eyes too, although they’ve been there forever… I wonder if my off and on use of TS put me into withdrawal during the off-times and made my eyelids like that. I guess we’ll have to find out! I can respect that you don’t feel like showing your identity. When you’ve gone through it and are healed up, I bet you’ll be more than happy to show your smize!

  5. Triple eyelid thing ain’t an Asian thing…this Greek girl has got it too!

    Do your eyelids get itcy and you rub them? In heightened anxiety I start to rub my eyes. The only thing I found to help is the sea buckthorn oil. It works so slow but it is progressing.

    My hands were like yours although they were never like that before this year. It got. orse as I cut off the cortisone. The only thing that helped it was heavy moisturizing, dead sea salt bath and sea buchthotn oil. Again slow to recover but after 3 months my hands are mostly clear. I was wondering if the skin would ever be healthy again and it is almost there.

    And oh yes. I must say you are a beautiful, beautiful girl! Trust that you can see this thing through. Remember there are so many of us taking this on along side you.Avoid thinking that you have damaged your skin so much already, skin is remarkable and can heal. I have had 3 operations and every time the doctors used the same incision to get to my insides. If my skin could be deeply slice by a knife only to be held together by thread and heal each time…let me tell you, the skin is a mighty mighty organ. So be good to your skin when you can and forgive yourself when you haven’t. Try not to catastrophize and try not to maximize/ minimize…cognitive behaviour therapy talking here.

    Take good care my friend

    • Gosh, not sure why I didn’t notice your comment until now! Wow, three operations? It’s so strange to imagine that the body can heal from deep incisions. I’ve never experienced anything like that before and hearing it from you is very reassuring.

      I don’t really rub my eyes as they haven’t been itchy since the spring/summer last year. I think the scratching habit has become a stress habit as well. Whenever I start feeling a little uneasy about something, I can feel my body getting a little bit itchier and start scratching… Or rather I start scratching and then I become itchy. Not sure if it’s the chicken or egg first. I’ve noticed this since the true itching has gone down. I read that scratching the skin actually sends signals to the brain to release Endorphins, one of the happy hormones. Being as bummed as I’ve been, I can use as many of those as I can get! Are you on the forum?

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