1 year 7 months

short update, things are looking good on most days.
by looking good, i mean lesser dry skin falling off.
skin is still red red red.
like a lobster.

still going through cycles.
in the middle of one right now.
was feeling cold for several days, skin temperature seems high.
it was extra red.
lots of dryness, the same old story.

nothing much to update since everything is about the same.
still red and dry.
arms still look pretty inflammed.

i have to keep reminding myself that things will turn out fine.

btw, the wounds on my fingers are finally all gone.
it’s been a long while..
rashes come and go, one week things feel really bad and next week things start to get better.
sometimes I feel better for a day after 2 days of particular bad days.
it’s random.
but I’m glad I’m moving along.
for the past 2 months or so, the oils on my scalps are coming back.
i’m happy to smell my oils!
hair fall isn’t as scary as it used to be, but my hair is still thin.
might need alot of time for it to grow back to the original volume.
eyebrows are also starting to grow back.
previously the hair follicle seemed to have changed their growth direction..
some of the hair would stand up at a 90 degree angle, some in the opposite direction..
but now they’re taming and going back to their original direction.
eyelids are able to fold better than before,
i need to moisturize it constantly.

keep praying.


6 thoughts on “1 year 7 months

  1. So happy for its moving and keep fighting … That is the only thing we have got . I am still in another flare :0 really in shocke as I was doing great progress and now back being red . No shedding and no oozing in very long time but this flare is all about burning and red :/ have to keep going till it gives us up … You such a good strong soul . Never forget that it will end . Love and hugs 🙂

    • maria! nice to hear from you again, it’s been really long since we last spoke.. i hope you’re doing much better now! i still think about from time to time : ) you don’t give up too!

  2. Hi Juliana, My name is Jonathan Root. I am going through withdrawal and volunteered for itsan to remake the website. I wanted to ask you about featuring your pics and story as well as blog.. Please reply to me when you have a chance.


    Jonathan Root

  3. Hi Juliana,

    I am happy to report that my skin has taken some big leaps of healing and most of my body is calm and no more rash or itch! It moved to the middle of my legs up and I am seeing some soft pink skin under the snake skin. The itching is easing up during the day and flares are short like 5-7 days now! I think in my 28th month, the year 2013 will be much more healing and hope for you too! xo

    • thanks for the good news joey! i’m glad to hear you’re improving and no longer feeling pain! all the best to you too : D keep bringing me the good news, i love to hear them!

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