Day 360

11 Months and 26 days in!

HOLY what cannot believe I have made it this far. Almost one year! I have been so out of it that I really have not been good at documenting my progress. I had another flare around Christmas but nothing as bad as the initial flare. A few spots of ooze cropped up. On my chin in particular. This flare is still full body though. It’s that dry, crazy shedding type flare with lots of tiny dotted scabs. I think I am coming out of it though. The progress is slow but at least it’s endurable.

However the flare is bad enough that I am housebound again. The cabin fever is real, guys. I don’t know what I would do without tv shows/games/books to distract me. I’ve been living this kind of half life for so long. I don’t even remember what it’s like to have a full nights sleep. Hopefully this year is gonna bring me some better times!

My arms were looking hella worse a few weeks ago but they are calming down a bit. They are ridiculously itchy though.

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My left and right inner leg. My god they have come a long way!! I remember when they were so bad and oozing I would rock back and forth in pain. Makes me really glad I took photos at my worst.

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My outer right leg. It feels worse than it looks. Just lots of shedding and bumpy. But again I can’t really complain.

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This is my ankle. You can really see what I mean by the weird dry flaky dots. Oh and my hairy legs hahaha.

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These things are back! They only last a couple of days before they flake off and disappear.

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My face is doing ehhh ok. My eyelids have this split in them and one morning they started bleeding. I’m talking droplets of blood. I freaked the hell out of my mum. I was just like “What? Did you accidentally delete candy crush again or something?” I laughed. She didn’t.

No more eyebrow oozing which is amazing. The patch is gone! There is only that bit on my chin. My face just sheds and sheds like the rest of my body. My scalp too. That annoys me to no end. Also no more balding! Glad that bald patch grew back. Phew.

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Fingers crossed my next update is not months away… XD

How you all doing? X

Day 94

3 Months and 5 days in!

Still in the middle of a major flare over here. Keeping my spirits up but I wish I was getting more sleep. Previously I was getting around 4 hours but this week I’m lucky if I get 2. I think it’s time for a trip to the Dr for some sleeping pills!

The parts of my body currently not affected are my fingers, palms, nose, upper back and toes. I find that every few days parts of me will get worse but then other parts of me will get better. Just like a little roller coaster.

I wake up everyday not knowing what to expect!

So my arms are doing much better. The joints are alright, no longer oozing. But my wrist is extremely itchy and oozing. Hahah it’s migrated.

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My belly is overall just rough and it only oozes if I scratch it ( which I totally do sometimes..).

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My legs have it worst by far! Sometimes the pain and itch is so bad it’s like I’m getting stabbed by needles!

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My face hasn’t really changed either although I am still losing lots of hair! (And oozing..can’t forget the oozing..) Neck is still swollen but not oozing as much! Hooray! I’ll take whatever positives I can get!

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You can see the scalp is doing no good. It’s pretty annoying actually as the ooze just makes my hair all matted and it’s just itchy. The amount of skin I shed from the scalp is scary.. Still, I’m trying to hold onto whatever is left of my eyebrows! I hope they don’t all fall out!

Got this amazing care package from my awesome friend and his family. Is it amazing or what! Cheered me up plenty! What a lucky girl I am!

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Can’t wait to hit 100 days! Hope all you skin warriors out there are doing well!!!