FOR MY FRIENDS AND FAMILY

i've recently decided to tell my family and close friends what i've been going through lately. in the first 2 months of my TSW, i was scared for people to know. i thought everyone would write it off as one of the many crazy things i've self-diagnosed myself with in the past, which i am totally guilty of. but this is real and i can not wait to heal and have a normal life again.

here are a couple blogs of people that have gone through TSW and inspired me to do the same:

http://antisteroid.wordpress.com - Juliana

http://www.curingredskinsyndrome.blogspot.com - Rochelle

http://misskittydefeatseczema.blogspot.co.uk - Miss Kitty

http://redskinsyndrome.squarespace.com - Joey

http://topicalsteroidwithdrawal.blogspot.com - Louise


here's a video that best explains what is going on with me:

MERRY XMAS!

so here is my skin right now. what a difference a couple days make! i was pretty bad in that video i posted earlier. anyways, the redness on my face has subsided tremendously. my neck and chest are still the same, however. i believe my skin improving is due to the fact that i finally got my period after 3 months. the 2nd day of my period is when the redness started to go down right away. hopefully my cycle continues to stay normal at 1x a month.

VIDEO BLOG

i made a video to share my story and where i am at today.

2.5 MONTHS

for the past couple of weeks my skin has gotten progressively worse. it's heart breaking. for some reason, i thought i would have it a little "easier" than everyone else. not sure why i thought that but i guess i was being overly hopeful. the rashes have turned into full, raised, and hive-y rashes. my neck rash is now creeping over my jawline and into my face. my forehead and around my eyes are red. the crooks of my arms are now creeping up to my arm pits. i have an oozing open sore under my left eye and a bit of raw oozing skin in between my eyebrows. speaking of eyebrows, they're starting to fall off at a rapid rate.

the other day i tried moisturizer withdrawal. it lasted only 1.5 days. it was so incredibly painful and paralyzing. my skin started to "crinkle". i did notice that i wasn't as itchy and my redness subsided a little. but i am not sure if i have the willpower to do it for any longer. now that i have moisturizer back on my skin it is back to being itchy and red.

i'm going to do a video blog soon. for some reason i can't take pictures right now. i am so devastated. i am so scared to see my family over the holidays. filipinos have a knack for being really loud and incredibly obnoxious. it's a culture thing. when i see them i know they're just going to stare and talk about my skin out loud. ugh, i feel so alone.

DAY 55 - ALMOST 2 MONTH MARK

last night was terrible. sunday night i had an omelette for dinner. i used my trustworthy local farm, carnivorous, corn-free, soy-free eggs. i haven't had eggs in awhile because of its high histamine content but i decided to live a little. the next day my skin was on fire. the itch was incredible. my office had the heater running all day yesterday too and i think it aggravated my already flaring, allergic skin.

when i got home from work i immediately washed my face and tried going to bed. an hour later i couldn't resist anymore. the itch was unbearable. so i let myself scratch. alot. it was all a blur. i had rage in my eyes. i was crying profusely because i regret what i was doing yet it felt so good. it was relief for the first time in days. i itched so hard and so long that at one point i gave up. i didn't care how horrible my skin was going to be the next day so i kept scratching for another 30 minutes while screaming and balling my eyes out. mike was so sad to watch me like this. after i was done i went straight to the shower to calm down. showers always help me. they throw me out of the itch cycle.. after my skin was red and raised so high above my normal skin. i was also oozing like crazy. i wrapped my neck in an old t-shirt and went to bed. 

when i woke up this morning i was surprised to see that my skin actually looked better than it has all week? i then realized it was because of my fake acrylic nails. because they're so rounded, smooth, and thick, it prevented me from tearing my skin apart. hopefully these don't fall out anytime soon...

THINGS THAT HELP

today i got acrylic nails. so far these things are helping me with the scratching. the tips are smooth and round and i can't scratch so hard without putting uncomfortable pressure on my nail beds.

dr. bronner's peppermint soap. the mint is refreshing and has a cooling effect on the skin.

elizabeth arden fragrance-free 8 hour cream. i slather this stuff on before sealing it up with aveeno lotion. i also put it around my eyes and it drastically improves the redness. 

DAY 50

every night my fiance has to tie my hands up because i violently scratch myself in my sleep. he says when he tries to stop me i get all crazy and yell at him to stop. i have no recollection of that. anyways, last night we accidentally fell asleep without tying my hands. i woke up in the middle of the night with cuts and bleeding scratches all over my neck. i feel horrible because yesterday was actually a good day for me. i could feel my skin healing. mobility was a little better too. however, today i am back to square one.

DAY 48

a lot of my free time i spend looking at other TSW blogs. i'm not nearly as bad as they are. so far, the eczema is only on my neck, arm joints, face, and just recently, my chest. my legs and back are perfectly smooth and supple. i'm wondering if it will spread and get worse in the next couple of weeks? 

right now i am in a lot of pain although i think the redness is subsiding. i can barely move my neck. it's so raw, tender, dry, and sore. the tightness is so uncomfortable. not very mobile at all. i have to move my whole body to look left and right. i am also noticing a bit of lichenification on my neck. hopefully it's not permanant. 

 

DAY 46

still the same as a couple of days ago. have been in this flare for over a month. i have to wear button up shirts and scarves to hide my neck. my face is so swollen it's hard for me to look in the mirror. recently, i have been doubting myself and wondering if this TSW will work.

DAY 44

my skin has been like this for the past 30 days. for about 5 days it seems to get worse and worse but then it gets better for a day or two. it’s been this same vicious cycle for the past month. the pictures below don’t show my face when it’s bad. usually my face, especially my eye area, is red and patchy.

skin is super dry, red, and leathery, especially on my neck and arm. my face is swollen and look like i've gained 15 lbs in the face. i have little blistering scabs that ooze fluid. it dries up and then i pick it off. at night around 7pm, when i come home from work is when the itchiness is at its worst. itch feels like it’s deep under my skin. sometimes i cry because it’s so unbearable. i itch alot in my sleep too. my fiance has to tie my hands up before i go to bed. i also cut and file my nails regularly too.

my story

hi, my name is melanie and i live in los angeles. i have had eczema since i was a baby. in the normal places like the back of the knees, my elbows, and thighs. nothing too crazy, just “normal” eczema. i remember my parents applying a low potency steroid on it and the rashes would scab and go away. around the age of 15 is when i started to really experience full eczema flares. my parents would regularly bring me to the derma. when things got bad i was prescribed high potency steroid creams and oral prednisone. when i was younger, i was actually too lazy to apply steroid creams everywhere, so i used them sparingly. when i was 16, i received my first kenalog injection. it was absolute heaven. for the next 2 years i didn’t really have to worry about my skin anymore. i would get the occasional rash here and there but it was never like before.

at age 19, my eczema came back full force. scalp to toe. i was also diagnosed with mild psoriasis as well. i then received another kenalog injection, a full round of prednisone, and an assortment of steroid creams (clobetasol, betamethasone, and elocon, to name a few). 1 week later i was in heaven again. quickly after i moved to paris, france for a semester abroad and for 6 months my skin was absolutely flawless. however, when i came back to the states i then had the worst flare of my life. again, same thing: injection, pills, antiobiotics, and creams. i was also diagnosed with dozens of food and environmental allergies.

from 20-24, i became addicted to cortisone injections and prednisone. i would have perfect skin for up to 1-3 months. my doctor then refused to give me anymore injections so i would go to different out-of-network doctors to get them at least once a month. i also used the creams too but i was more addicted to the shots.

at 24, realized the shots weren’t working anymore. they were doing more harm than good. i decided to see another doctor and he suggested CellCept, an immunosuppresant. i was on it for a year and it seemed to make a huge difference. i finally weaned off shots and pills but was still using topical steroids everyday to keep the eczema at bay thinking that these creams were not as dangerous as the steroid injections. boy was i wrong. 

last june i had stumbled upon dr. rapaport’s study on “red skin” syndrome and Topical Steroid Addiction. i  decided to stop all steroid creams. within a couple days, i started to flare. mostly on my face, neck, chest, and legs. it wasn’t as bad compared to other TSW bloggers. i eventually got over that first flare but after a month of traveling and not eating very well, i started to develop another flare on my face. i was in new york, about to party with old friends that i hadn’t seen for awhile and was terribly embarassed of my skin. sad to say but i gave in. “just this one time” i told myself. a couple days later the steroid cream stopped working and my face swelled up so bad i couldn’t open my eyes. facial edema and red skin everywhere. i looked deformed. i was so sad. i started to miss work and that’s when i decided i needed another kenalog injection. “just this one last time” to keep me clear for the winter. right. 2 months, 3 kenalog injections, 2 rounds of oral prednisone, lots of steroid creams, and a week of antibiotics later i was devastated. nothing worked anymore. the shots worked for less than a week, not even.

on october 15, 2013 i decided to stop all steroids again, cold turkey. this time i am keeping my promise. it has been hard as i have a full-time job and have to deal with clients in-person all the time. i can’t look straight into anyone’s eyes. i am extremely self-conscious and feel like everyone is looking at my mutant skin. i don’t hang out with my friends anymore and usually stay at home every night. i used to be the most social person to be around, now i am plagued with severe social anxiety. words now stumble when they leave my mouth. i almost feel that i've gotten stupid. everyday is different and most days i am afraid of waking up to see how bad i’m doing. i also miss food. i am paranoid about food and feel like anything i eat will affect my skin. i eat a 99% organic diet, completely free of wheat, soy, corn, tomato, dairy, and peanuts. i also take daily supplements–50 billion probiotic bacteria, l-glutamine, biotin, evening primrose oil, and l-tyrosine.

anyways, i’ve just started on this journey and hope to meet others who are in the same boat. i feel alone. 

all my love,

melanie

here's a picture of me with clear skin back in my steroid daze for comparison: