To celebrate our accomplishment of going through 6 months of pure
freaking hell, I will break red skin syndrome down for you! Break it
down!
The 6 degrees of red skin syndrome/ aka.. topical steroid addiction withdrawal/ aka....steroid induced eczema.1. The ooze......the stick gooey smelly liquid that seeps out of your unable to close capillaries!
The
1st time kline's knee pits oozed, I started yelling at him because it
was the middle of the night and I thought he had ripped his skin open
and was poring out blood! But, no! It was the beginning of the oozing
stage of red skin! I will never forget the feeling of that sticky sweet
smelling ooze on my hands as I scratched Kline all day and night
long...kind of like a watered down honey. Nothing you ever want to feel
or see coming out of your Child's skin.
2. The flake....the shedding of your damaged dry skin.
The
1st time I figured out klines skin was sluffing off of him was one
night early on in withdrawal, I climbed into bed and once again yelled
at Kline and Denny, " Why is there sand in your bed every night?". Then
in the morning when I took of his pj's and there was a pile of skin on
the floor it hit me....holy shit it's his skin, not sand, you ass hole!
And so began our daily bed stripping and washing. I have seen pictures
of others going through red skin with piles and piles of dead skin on
there floors...it is amazing how hard your body tries to start a new to
rid you of the steroid damage. Kline's flaking was very minimal compare
to some...and since I am the worst house cleaner in the world, I am
thankful for that!! We will probably find kline's skin in the years to
come...in every nook and cranny of our un-kept house! ;-/
3. The
insane itch and red fire burn...ah......the itchy bastard, as I like to
call him. The debilitating pain of the craziest itch and red hot fire
burn you have NEVER experience before!!!
This is what people
just don't get!!!! There is no way to explain just how bad this pain
and itch is for the red skinners! It is insane and unless you see them
flare you just can't get it! It is not just an itch....it is like
getting the worst sunburn you have ever had all over your body, then
getting red ants to bite you and crawl all over you on top of the sun
burn, and then getting the worst poison ivy all of your body on top of
the ants and sunburn. This is some crazy shit people!! And let's top it
off with it lasting for months and months , day in and day out, never
resting and never ending! No wonder people with red skin can become
suicidal!!!! Crap, I was practically suicidal just dealing with my kid
with red skin!
4. The completely sleepless nights!.......the
fucked up nights of a red skinners! Not sleeping till the sun comes up
and itching and burning all night long as you long so desperately for
sleep!
As a parent this was the most debilitating for me, the
lack of sleep! Insane lack of sleep...lack of sleep like I have never
ever seen nor ever want to see again! Oh yeah and let's top your lack of
sleep off with your baby screaming and crying in pain all night as you
rub, scratch, itchy, pet and blow on every inch of their body. You
become most likely clinically insane....you are raw, angry, depressed,
and so sleep deprived you Can not think straight! This is when you are
not your finest...I have never screamed, cried or cussed more in my
life! I would punch the wall to get my aggression out and pull my hair
out, literally, anything to have some release from the stress and
Insanity. I can now see why they use sleep deprivation as a prisoner of
war tool......anyone would take after dealing with the sleepless nights
of red skin!!!
5. The smell....the sweet aroma of the dried skin, ooze, and olive oil baths!
Oh,
man, the smell of our bathroom after kline's 13 hour baths is enough to
kill someone. It literally makes me want to puke! I NEVER Want to
smell that or the sweet yeast smell of his ooze ever again in my life.
The smell hits my heart hard...it's like a flash back to all the horror
or red skin!
6. The scabbing.....the potato chips on your body!
After
Kline oozed he would scab all over! The backs of his knees felt like
they had potato chips stuck to them.....and he still wanted you to
scratch them so hard! This has to be the part that looks the worst in
kline's case. My poor boy's nipple scabbed and fell off, scabbed and
fell off, and scabbed and fell off so many time! He got a new nipple
ever few days for months! And I can't even imagine the pain he was in
when his poor pee nee was oozing and scabbing for months and months!
Heart breaking and unimaginable!
6 months ago I had no
idea what the hell was going on with Kline and his skin.....and I had no
idea what we were in for! I will never ever ever get over the damage
that a drug, steroids, have done to my son. I would never imagine in a
million years that still after 6 months of being off steroids, his body
would still be trying so hard to heal itself. The capillaries damage
from the steroids is insane.
I hope and pray that each day this
blog and kline's story saves just one person from the hell that our
family and especially my boy has been through!
To anyone that
does not believe in red skin or the damage steroids can cause...come
spend a day at our house! I welcome you into our world of pain and
torture to change your mind! I wish kline's doctors that prescribed the
endless steroids for his eczema could spend just 1 hour with Kline so
they could see the damage their prescriptions did to my son. In the wee
hours of my insanity I curse kline's doctor..not for what they did as
much as what they are doing now....and that they don't believe what my
son is going through is a real thing. That they are still prescribe
massive amounts of steroids to other little kids truly breaks my heart
and I wish that one day they see the light!
Enough preaching for now! Here we go into week 24!
Xxoxoxooxox Loren
