Monday, April 14, 2014

15 MONTHS off topical steroids!!

Today marks 15 whole months off topical steroids!!  I never thought I would make it this far.  The first few months were so horrendous....each day agonizing pain stopped me in my tracks.  I remember thinking there was no way I would make it 6 months or a year or even 15 months.  It felt like time no longer existed.  I felt like TSW put me in a black hole where everything stopped and ceased to exist including myself.  Sounds pretty dark and depressing, right?  Well welcome to TSW!!!

But the end of the tunnel for me is near....the light is shining brightly!  I still have a little ways to go with my skin....dry skin patches here and there and the occasional mini-flare that affects maybe 0.5% of my body.  I haven't smelled the sick metallic odor of ooze in a long time.  I change my clothes and sheets like a normal person.  I vacuum once or twice a week like I normally did.  I am almost back to normal with my energy levels (although with life long eczema and other health problems, I really don't know what normal is).

The bottom line is 15 months in, I never expected to feel almost normal! I remember reading other people reporting being at 15 months and still suffering pretty bad.  I remember being scared that I would suffer for a pretty long time given my usage history.  People would  say that it wasn't too bad because the skin would flare for awhile, and then you would get a break.  Unfortunately my first 8 months saw no break.  I envied those that would catch a few weeks break and enjoy life until the next flare.  I figured I would just flare continuously until my skin decided to heal.   I had read of some people at 18 months who had had no break.  It scared me to no end to be like that,

So to be 15 months in and 90-95% healed feels AMAZING!!   I have not had a big flare since starting the gene therapy 6 months ago! I feel God has blessed me in so many ways!  I want to use that blessing to help others recover from topical steroid damage in a much shorter time with less intense symptoms.  I want to thank everyone who has gone to get tested for the MTHFR gene mutation and reported back to me!  Together we may change the course of TSW!  I truly feel great things are around the corner!


  1. Congratulations! I've been following your blog for a while now and have started taking 5mthf and active b12. I haven't been taking them regularly enough to take your poll but will definitely start doing so so I can weigh in. Happy healing!


  2. Congrats on reaching 15 months - must have been one hell of a year for you! I cannot wait for this to be my son, only 3 months in and no real improvement yet. If I could just see a little improvement I'd know I was doing the right thing. Time will tell, its just so frustrating! Louise x

  3. Oh my... "I haven't smelled the sick metallic odor of ooze in a long time" PERFECT description!! And will there be a day??? Thanks for the updat!

    DAY 46 hell