Sunday, July 20, 2014

Will I Ever Be Healed? (No pics)

Most people going through TSW have used Topical Steroids for a long period of time.  Years... DECADES.  Most of us have no idea what it's like to have normal functioning skin because we've been reliant on TS for so long and our skin no longer functions like normal skin.  The rotten, flarey, itchy, OVER-sensitive skin becomes your normal.

I've been withdrawing for 141 days.  I've healed a LOT but still have a ways to go.  I'm in the phase now where my skin is CONSTANTLY a flaky, itchy, red mess.  It's not oozy and "woundy" looking anymore, but it's just a mess.  On top of it being unsightly and obnoxious, it's also SUPER HYPER OVER CRAZY sensitive!  I have to wear long sleeves the majority of the time because if anything (and i mean ANYTHING) touches where I'm broken out, it will flare up and welt and be uncontrollably itchy.  I've also started having food intolerances to food I was never allergic to.  I had a HORRIBLE reaction to sweet potatoes the other day to the point my husband had to come home.  It's so frustrating.  Oh, and did I mention that putting WATER on my skin sends it into an ITCHY, BURNING, UNCOMFORTABLE mess for about 20 minutes!?  WATER BURNS ME.  OVER IT.  Moisturizer of any kind is no better.

At 141 days, I'm tired.  I'm over this hell and ready for the next chapter.  I'm ready to go swimming and leave my house at the drop of a hat.  I'm ready to go on a date.  I'm ready to feel pretty.  "But you ARE beautiful, jen!"  While I understand that you believe this, I don't feel it at the moment.  Wait, let me be clear, my soul feels beautiful, my face does not!  Kiiiinda hard to feel beautiful when you have no eyebrows and your skin is red, inflamed, and flaky.  It's gross.  It's ugly.  You feel it ALL THE TIME.  And the heat makes it unbearable.  

Anyway, not writing this for a pity party, just letting some things go.  At the moment I feel like I'm never going to be healed.  Like I'm never going to have a normal life.  I'm never going to be able to take my kids to the pool or to the park or anywhere without PLANNING THE HELL AHEAD.  It's beyond prison at this point. To be tethered so closely to your house, unable to leave it most of the time, is sad.

Hoping for a break.  Normal skin to make me feel like there's hope ahead.  

On a positive note, my energy is coming back and I'm starting to have stamina to go and do things!  That's good.


  1. Jen,

    Your post remind me of what I felt exactly over my past 2 years of hell. I was in such a bad state that you can't even imagine, and I thought I would never recover.

    Things started to change only when I started to seriously take stock of my life, especially on the things that I can control vs the thing that I can't. I thought - if my skin is going to be like this for the rest of my life, can I be a happier version of myself and have more control over the things in my life?

    Once my perspective changed, everything changed. My skin is no doubt the the beneficiary of having a good positive mindset, among other lifestyle changes that I can control and influence.

    Hope this helps. Sometimes it helps to not pay attention too much on your skin, but focus on other stuff to take away the negative attention and energy.

    Leslie C
    Founder of
    Personal blog at

  2. Oh Jen, I feel your pain right now. Im feeling the same way at the moment. When does it get better?!

  3. Hi Jen.
    I've been off steroid creams now for ten years - it took 6 years to become flare-up free, a diet change and my husband developing Axhilirit natural products for me that is assisting other sufferers around the world as well.
    Last week we visited a friend that started with our cream on her hands about six months ago. Her hands are clear and do not give her any more problems, but her legs are so severe that the dermatologist did a biopsy!
    She complained that she had spent $500 already on her shins and I asked her why she did not use our cream to assist with the withdrawal of the steroids instead of continuing with applying the medicated ointments.
    She stared at me in shock, stating that she never thought of it.
    With her hands being clear, she was so focused on treating her legs the traditional way that she forgot that her hands used to be just as bad.
    It takes time for people to adjust to alternative methods of treatment.
    One thing I have realized is that most people, once healed, forget quickly where they came from and do not assist other sufferers in their search for relief and eventual clear skin.
    My own journey with eczema took almost 40 years. Now I am comfortable in my skin but cry whenever I see people with a similar condition.