Meditation

Just wanted to briefly write about what I am doing to help my healing process.

I know some of you guys are changing your diet, taking supplements, making creams...etc.

I have changed my diet a tiny bit, but mainly I chose meditation.

I spend 1.5 hours in the morning, 1 hour in the afternoon, and 1-2 hours at night meditating.  They are different types of meditation though.

I'm not going to write what kind of meditation I practice.  I mean I really want to, but the reason is because the type of meditation I practice, I learnt from a master of this meditation and I spent a significant time in perfecting my learning.  Apparently it must be learnt correctly, otherwise it can have damaging consequences, especially to the mind.  If you are interested though, you can E-mail or message me about it and I will be more than happy to share what I do.  I cannot teach it to you, but I can introduce it, and perhaps you will be able to find your way to learn it correctly.

I truly believe that diseases are an obstruction in the mind.  

Some may say that this is not true, because it is the steroid that destroyed my skin, and Red Skin Syndrome is not a disease.  In a way this is true, but then I think back...why did I start to use steroids?  Because I had skin problems.  Why did I begin to have skin problems?  The way I see it, it is because something in my mind was not balanced.  If nothing in my mind has changed from when I first developed my eczema before I used steroids, to after I stopped using steroids, it is probably still going to be there even if the steroid-damaged skin is healed.  I trust that my body can repair the damaged skin, but I need to work on my mind to heal the underlying problem.

So far meditation has been rewarding.  I know one girl who had severe eczema, used steroids for 35 years, stopped, and then had Red Skin Syndrome.  She healed in 6 months from the day she started meditating.  Not only did her RSS & eczema heal, she's healed a lot of her other health problems too.  She even has many pet cats now, which is amazing because she was extremely allergic to cats all her life before she started meditation.  I checked in with her a few weeks ago...we had lunch and discussed my experiences and symtoms while practicing meditation, and we've had many similarities.  Hopefully that means I am on the right track...that gives me so much hope!!!!!!

Positive thought of the day: Everything happens for a reason.  I know it's hard, but think of all the positive things this horrible skin problem has brought you.  There will be a handful...guaranteed!  For me, here are some.  I am closer than ever to my family.  My busy lifestyle has calmed down.  I will probably forever see health as a number one priority where it should be (before I never even thought about health).  Before, I never shared any of my problems to my friends, but now I open up more.  I discovered that I am musically talented.  I am more compassionate towards others.  I don't worry about myself physically...seriously...before I would spend a lot of time being girly...experimenting with make-up and doing my eyebrows, nails etc...now it's like...I don't even think about that hah.  I've figured out who the important people are in my life.  THERE IS JUST SO MUCH MORE!!!

Scratching feel SO GOOD...

Looking less like a lobster these days.  

But to start with, I was never as red as some of you guys out there.  I really have so much respect for all you skin friends out there who made the choice to stop using steroids.  It's a really tough choice to make.  Anyone could just be like yolo and go ahead with it, but to make a conscious choice to go through this HORRIBLE annoying episode because it's the right thing to do...is just...amazing.  I want to throw a party for each and every one of you for making the best decision of your life.  

How about we all have a party when this is over?

When I wake up, my skin is not so red, but there is so much crust and dead skin!!  Skin on face is starting to leak less...and crust more!  In reality, skin is more red than in the picture, but nevertheless less red than before!  The dry skin piling on makes it constantly itchy though...I am constantly running to the freezer for an ice-pack to prevent myself from having an uncontrollable scratch fest.  I think scratching is okay as long as you don't damage the new skin underneath...but once I start...I CAN'T STOP!!  I also only wash my face with ice-cold water & olive oil.  I know that under all this crust and dead skin...my new skin is forming...and I don't want to damage it.  Under the skin, I can tell there are still those itchy juicy bumps...it's just hidden under the layers.  SO ITCHY!!!

Overall, I am getting less red, and my skin is getting stronger/flaking more.  Perhaps that marks the end of this flare??

Man, sometimes I feel bad for whoever is reading this.  Some of these pictures I post are kind of gross.  But I post them because I would want to see...

Positive thought of the day:  Sometimes when I am scratching myself, it feels so good.  It feels so good to the point that I am glad I have an itch, just so I can feel the satisfaction of scratching it.  Does that sound weird?  Probably.

What I am using Now & Before: Coconut Oil & Past Moisturizers

I am currently using Coconut Oil as an all-body & face moisturizer.  The brand I use is Nutiva!

It is organic, unrefined, not deodorized/bleached, and made without pesticides or hexane.  I don't know what hexane is, but I assume it is something you don't want in your coconut oil haha.  I don't use it to cook, although I know some people do ingest it in spoonful for skin.

I know that some of you guys don't put any moisturizer at all because it just further irritates your skin.  For me, I could NEVER leave my skin without moisturizing.  I wouldn't be able to move, will bleed through my skin, and would be in so much pain.  I don't know how you guys do it...big hugs.

Past Moisturizers & Notes...university style!

Vaseline 

- Works for me when my skin is so cracked that it is painful to move, and oil just doesn't cut it.

- I put a moisturizer first (oil/cream) and then put the Vaseline over it as a seal.  This is because I find that instead of moisturizing, Vaseline just seals whatever is under it, so it is difficult to use throughout the day unless I take baths to hydrate my skin again.

-Vaseline also makes my skin hot at times...when my skin is at the Red Juicy Flare-up stage...it just irritates my skin and makes it hot and itchy.

- I hate how sticky it gets...kind of uncomfortable to dress after application.

- Make sure to use the fragrance-free kind.

Emu Oil 

- Works for me at any stage really...

- I find that it reduces redness.  It is supposed to be anti-inflammatory and help blood circulation.

- A very light oil...not as greasy as I thought it would be.  Easy to re-apply throughout the day as it doesn't build up.

- Doesn't sting on open woulds - painless for damaged skin.

- Consistency stays a liquid, so it is difficult to carry around as it tends to leak out of containers and get everywhere.  Refrigerated, it becomes thicker and easier to handle.

- Supposed to be fragrance-free, but every brand I've used has had a light poultry-smell.

- It is said to help the skin if ingested, but I've never done this.

- One of my favourite moisturizer.  The reason why I choose coconut oil over emu oil is because emu oil is expensive and difficult to find, and I prefer the solid consistency of coconut oil.  I also prefer smelling like a tropical goddess over raw chicken.

Shea Butter

- Good barrier moisturizer.  I use it on my hands and elbows/knees.

- Difficult to scoop out or spread...it is pretty much a hard-solid unless you really rub it out onto warm skin.

- Doesn't work for me while I'm having a flare-up...it is too hard to spread on broken skin.

- Cannot reapply throughout the day as it builds up very quickly.

- Although it is fragrance-free, it does have a funky smell to it.  I don't mind it though, it smells natural.

Olive Oil

- I love using olive oil in my bath.

- Works as a body soap and make-up remover.

- I don't use it as a moisturizer because I find that it is too thick and oily.  I also smell like a salad when I do.

- Occasionally irritates my skin and makes it itchy...especially if used on open wounds.  Maybe I am slightly allergic.

Cetaphil Lotions

- These lotions are not hydrating at all on damaged skin...they dry out quickly.  Also stings on open wounds.  Maybe it's the alcohol ingredient.

- Works well on un-damaged skin...like my calf area.

- The Restoraderm line stings...like a lot.  More than the regular line.

Cetaphil Barrier Cream

- Keeps moisture in very well, for a long time.

- Thick and difficult to apply.  Works very well on my hands...I used this cream during the time that my hands healed significantly.

- Works for me when I have elephant-skin, even if I don't moisturize under it (since it's a barrier cream).  You can really see a difference.

- Doesn't sting on open wounds.

- Contains Shea Butter.

- Builds up very easily.

Eucerin Original Moisturizing Creme

- Works for me during those painful flare-ups where the skin becomes cracked and it is painful to move...as it doesn't sting on broken skin.

- It is really thick, the consistency is between regular cream and Vaseline.

- Difficult to spread, like Vaseline.  Especially when skin is flaky.

- Lasts a long time.

Kenkay Skin Relief

- Favourite cream.

- Works for me after the red hot stage of a flare-up, when the skin is a little less calm

- Very easy to spread...soft.  Absorbs pretty well into the skin, so it doesn't build up as fast.

- Doesn't sting on open wounds.

- I prefer the lotions over the creams (pumps over tubs) because it is not as thick.  It also has one less ingredient than the creams...so I figured that is one less ingredient to potentially irritate my skin.

Curel Itch Relief Lotion

- More like a cream than lotion...very hydrating and lasts a long time.

- Doesn't relieve itching so much.

- Stings a little on open wounds, but goes away in a hot second.

- Builds up quite easily.  I think it's the Shea Butter inside.

- Not sticky at all, very comfortable to use under clothing.

- I would say this is my favourite lotion, but every time I've used this lotion it has lead me to a flare-up.  I don't know if it is because of the lotion, or if it would have happened anyway.  It has definitely given me many calm months before each flare-up, but I am staying away from this lotion for now.

Aqueous Cream

- Another good non-irritating cream.  Just remember to get the SLS-free kind.

- When my skin is good enough to take showers instead of baths, I use this as my soap because it is easy to spread and inexpensive.  Also doesn't make the shower area oily and dangerously slippery like after I use olive oil.

So if you're wondering what moisturizers I recommend, here is my answer.  I use different oils/creams during different stages as my skin heals.  Just because one kind is working extremely well on your skin, no matter how exciting I get that I found something that works...I make sure not to go buy boxes of it because the next moment my skin may react badly to it. In a nutshell though, I prefer using oils (currently coconut oil) when I don't have to go outside, and can stay at home being a shiny, greasy mess.  If I have to go out though, I use the medium-thick creams, like Kenkay's Skin Relief or Curel's Itch Defense Lotion.  

Positive thought of the day:  I have always loved crafts.  I've never had the time to stay home and let my creativity take me somewhere, because of my other priorities like school and being social.  Recently, I've taken my dusty old craft box out, and started on some projects!  Very relaxing and therapeutic!  It's a fun activity where you can express yourself, without having to move around :)

What do I wear?

I used to wrap myself in dressings (tubifast is amazing...seriously best invention ever), and then wear a loose shirt/pants over it.  Dressings helps keep the moisture in, lessens the damage when I scratch, and my skin generally feels a lot better when it is wrapped...kind of like a second skin that covers my damaged skin.  But recently, I'm getting these prickly feelings all over...and it makes it difficult to wrap myself without feeling like a cactus trying to wear clothes.

I've bought several of these towel wraps:

They are amazing!!  I spend my days lounging around in them...I even sleep in them.

For me, it's better than wearing no clothes at all because when I don't wear anything, my inner upper arms stick to to the side of my chest, and both sides get hot and itchy.  I don't like it when my skin touches another part of my skin...when I sleep, I use part of the towel and put it between my legs so my thighs dont touch each other.  When I am up and about they don't touch each other though...only when I sleep on my side.

The towel that I bought is 100% cotton, and it is really soft and not scratchy (I know sometimes towels get scratchy...I was worried about that but thankfully it was not one of those towels!).

Positive thought of the day:  I found out that I love eating crisps.  I never used to eat them before, but my dear parents have been buying foods that I can eat; right now, I can't open my mouth more than a pinky-wide to eat because my skin is so tight, so I can only eat things that are small and flat...= crisps!!  I eat the healthy kind (haha healthy kind of crisps...that is like saying the healthy kind of cake)...no salt, and baked not fried...just potatoes and olive oil.  I think they are making me fat, but it's okay.  I'd rather be fat than have horrible skin...any day.

Ooze vs Blood?

This is kind of weird, but I noticed that when I see blood, it is a good sign.

Maybe it's because I HATE the smelly yellow liquid that leaks out of my skin...and that I would take blood over it any day.

Recently, the holes in my skin has started to leak blood instead of yellow ooze.

This is a part of my cheek  The holes are getting a lot smaller...hurray!  Skin is feeling tighter and more plastic-y though...very painful to move.

I found that yellow ooze will just leak and leak and forever leak...even as it crusts, it will still be wet.  But with blood, it will dry up eventually and turn into a scab.  

Positive thought of the day:  When I am healed, I will appreciate my skin so much more!!!  I'll probably wear the skimpiest clothes everyday just to be like "LOOK AT MY SKIN"...hahaha.

Sleep

Since I stopped steroids, I haven't been able to sleep for more than 2 hours at a time.

Recently, I haven't been able to sleep AT ALL for days at a time...it's very stressful.

I am mentally and physically exhausted all the time.  I will have a conversation with someone, and completely forget what it was about.  I will sit on the sofa, and completely zone out for an hour...like a zombie.  It's even so tiring writing this post!!

I want to fall asleep so badly, but when I get into my bed, I am just so uncomfortable, itchy, dry yet wet at the same time...and I can't fall asleep.  If I don't get up to do something, I will just end up scratching myself to death...and so I get up to do something and end up not sleeping.

I don't want to resort to sleeping pills...but are there any food/herbs that ignite sleepiness??

Anyway, I know I shouldn't stress out so much about sleeping...so if you're having the same problem...let it go as well.  I mean don't get me wrong, sleep is probably most important in healing...in fact I can physically see that my skin mends after a good sleep!  But what I mean is, be prepared that your sleeping routine will change.  I keep reminding myself that it's okay I'm not getting the usual 8 hours of sleep (or however much I used to get...).  For one, on top of the skin being irritated and uncomfortable, I am practically immobile and get no exercise.  I also get some of my sleep/mind rest during one type of my meditation. 

Positive thought of the day: I am glad that I don't really have any priorities in life right now, other than healing my health.  Though I can't sleep, I don't have anything to do right now that requires me to be fully rested.  I respect all of you who have family you need to take care of, children, work, school etc. all while you go through topical steroid withdrawal.  That is just crazy.

What would I be for Halloween? HEALED!!

I love parties and I love dressing up!!

That is why I am sad that I won't be doing anything for Halloween this year.

If only we could really be anything we wanted to be for one night!!  Like...if there was a Halloween God who could grant us that wish...I'm sure we would all wish to have normal skin!!  But I don't know...since it's only for that one night where my normal skin would be granted...I feel like when the wish is over, I would feel so much worse than before.  Because I would know what it's like to have normal skin again...and I would be able to compare the immediate difference.

So maybe I would just wish to be invisible instead.  Then I would go out and take a long walk without the stares.  Or stalk people for fun.

Hey maybe I can still go out and celebrate.  If I went out like this, people might think it's make-up and assume that I am dressing up to be a burnt victim or something...hah who am I kidding!

Anyway...here's a picture that is kind of gross.

This is what my skin looks like after a bath, and before moisturizing.  Looks a lot redder in real life than in the picture.  Beneath the yellow crusty ooze, it is cracked, hole-y, super itchy, burns, and is painful.  After I apply my coconut oil though, the pain subsides.

Oh, I take epsom salt & olive oil baths right when I wake up, and again when my skin starts to feel dry.  During the bath, I can relax and stretch out my body without the tight skin ripping!!  After the bath, I am not as red, and not as dry! It also washes off the yellow crustiness and smell...so I feel a lot cleaner = subconsciously less itchy.

Positive thought of the day:  All day I've been thinking of my future halloween plans!!  Definitely going to go all out again...hopefully at this time next year, I will be healed!!!

Back to Blogging…for real this time!

I'm not sure who will read this, but Hi :)

The last time I posted was on June 18th.  I haven't actually started blogging because, to be honest, I was not in the mood to do anything.  My skin was getting worse, my life was changing dramatically, I was depressed and didn't feel like doing anything.

But since I began doing a lot of research and understanding my body, I've beaten the blues!  And I am back to wanting to blog...for real this time.

Now that I've finished school, and am home with family, I feel like I can finally focus on healing in a stress-free environment.

Here's a basic summary of what's going on with my skin…

After continuously using topical steroids for 20 years, I stopped in June 2010.  I've been having many many episodes of flare-ups since this day, up till June 2012 (2 years).  If they were small flare-ups, I let them get out of control and then naturally recover.  For the bigger flare-ups, unfortunately I resorted to using steroids.  Actually, going back to using topical steroids was not my choice.  I did believe in natural healing and was determined to beat my eczema without topical steroids, but it was extremely difficult due to me still being in university and living the student-life.  I ended up getting dragged to the hospital multiple times, where they slathered topical steroids on me, and I also ingested steroids orally.

Every time I left the hospital, my skin was so much more damaged!!!

That's when I found out about Red Skin Syndrome & Topical Steroid Withdrawal!!

Dr. Rapaport recommends cutting topical steroids out completely instead of weaning off it.  I didn't know this at the time I decided to stop/cut down on using steroids, so I thought I was on a road of recovery…unknowing that the use of steroids is cumulative.

I have not used steroids at all since June 2012.

End of October 2012 now...I am having the biggest flare-up!!  Ok not the biggest...but everytime I have a flare-up it feels like the biggest...

The biggest problem I am having right now, is my face.  The skin itself may not be as worse as it is on some other parts of my body, but the fact that it's on my FACE is just so annoying. 

Let me show you...

Face is juicy red and soo itchy!!  This is after I took a bath...so it's not crusty like it is when I wake up.  The shininess is the skin leaking.

My face & neck is leaking yellow liquid, juicy red, hot and itchy...is probably the most annoying thing right now because I can't sleep in a comfortable position.  I just feel so gross and I don't want anything to touch my body...

I can wrap my body up without irritating the skin too much, but if anything touches my face or neck it just gets soo itchy.

Positive thought of the day: I've never been one to spend much time by myself.  Before my skin issues, you can find me out all day all night, surrounded with family and friends.  Being alone all the time now, I can really reflect on myself and think about my values and goals in life.  It's been refreshing!