Tuesday, July 15, 2014

Day 131- Day 134: Red Skin Syndrome and a Tip Video

I just recently saw this news report where Dr. Rapaport talks about our condition!  It's so nice that he's getting the word out...you should check it out.  I've been calling it Topical Steroid Withdrawal more than Red Skin Syndrome, but he seems to call it Red Skin more... so maybe I'll change up my vocabulary.

Other than my normal pics, I made a video this week.  I looked a hot mess, I'm wearing a robe that won't stay closed, and my kitchen cupboard is wide open... haha, but I wanted to share a little trick I use to keep ice packs secured around my neck. I've lost all sense of discretion and pride in my looks haha... so posting this is crazy to me. NOTHING I would've ever done before.




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Day 132
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This wrist is so up and down.


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I woke up scratching... TORE up my neck!?

Untitled

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Day 133

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Those brows... blech
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I really hope they come back



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SOMETHING set me off... sigh



Day 134

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3 comments:

  1. Hi Jen
    I loved your video! You look fine. Your kitchen is spotless compared to mine (the joys of being a share house). I can now start reading your blog posts in your voice now instead of some variation on my own. ha ha.
    Thanks for finding the Dr Rap video too, I posted it to my blog. Its cool there's finally a news thing about it. Hopefully lots of watchers (well, whoever still watches actual TV) will see it, google red skin syndrome and find Itsan!
    Good luck with what comes next!

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  2. Well done Jen.
    What I really like about you is the way you post lots of photos. This will pay off once you are healed and you will see a big difference in your skin.

    You are amazing and such a valued part of our itsan community x

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  3. Hey there Jen!

    I got of facebook for a bit, couldnt handle talking about TSW and of course there was nothing to post since all i do is itch itch itch lol. BORING....anyhow. I just thought id look you up since were both in the same month. UGH keep in touch! :)

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