Thursday, December 5, 2013

10 months in...yikes

Sigh..
How can I make this post encouraging and up beat? I don't know if I can...
My skin has taken quite a turn for the worst. Truthfully I haven't thought much about it.
Everytime it bothers me I just do something else.  Usually I stay indoors, my home is nice and dimly lit... So really it isn't until I leave the house that I see how bad my skin has really gotten.
I  am sure behind the smile and what tries to be an upbeat personality people can still see a girl with messed up skin. Thankfully those who I meet aren't so shallow and are able to love me inspite.
It is the strangers that give me anxiety. Though most don't notice... Because I wear turtle necks, makeup and keep my hands in my pockets.  What a way to live?
Really the only people that see me for who I really am, is my family and you! I guess a part of me much prefers to hide and just pretend I am ok.  You know the saying 'fake it till you make it'.  I am repressing my emotions and even dealing with my skin...because quite frankly I can't do it anymore.
I really didnt want to write this post...but I suppose someone else can benefit.  You are not alone.  I wonder will this ever be over?  I can only hope. The progress is so slow I have confused getting better with getting worse.  Darn photographs!  Thought today was an ok day.
I am not sure what is worse in tsw...the fact I am in so much physical pain...or so much internal pain?? Even on my best skin days... I have been traumatized. In a way no one really understands?  When was the last time the average person can say tepid water burns their skin every time they shower?
I really should be used to this?? And some days I am.  I know that my upper lip will heal next week only to rip open again. I know that my lotion will burn for 6 minutes once I apply it.  How do you get used to burning? Stinging? Bleeding? You just don't.
I have gotten used to the 'look'.  And I attempt to still fix myself up.  This can go one of two ways...a big score because I feel pretty for a couple hours...or a big fail because I just can't pull it off.  My eye is too swollen. My for head too wrinkled. My neck too stiff. It's a gamble.
My favorite place to be is in my bed in deep sleep!! Time stops for a couple hours. I no longer have topical steroid withdrawal...even in a nightmare... I never have bad skin!!
I never imagined this to take this long. I cling to the hope things will improve by summer. Probably not a healthy idea...but if I have no hope...then what??
Hope is what gets me through. It's what gets all my fellow sufferers through. We will see what summer brings :)
I started taking some vitamins. Just a multi vitamin and a hair nail and skin supp. I have began to eat very healthy again. Not for my skin...but for me.  I need energy. We will see after a month how I feel mentally!
Writing this post has been hard. Just brought to the forefront of my mind how 'bad' I really am doing, but trying to keep the victory for my kids and husband! 
Must suck to have a mom with these sort of issues:(
Ok enough sob story...though this may suck.
..someone in the world would rather my little skin issues than their's!  Sometimes we need a little perspective!!  I encourage you all keep loving your family. Don't get so caught up in your withdrawal that when you come out you are a stranger to those you love!
Merry Christmas Friends
Vee







This was me earlier today...just to show you guys sometimes you have to just suck it  up and make yourself laugh!! LOL

Tuesday, October 29, 2013

Before the 9 month Point

Almost 9 months in...
You have got to be bamboozling me.   What an achievement!?  What a disappointment!?
To be fair,  I am  glad I am 9 months in.  That's  about half way or 3/4 of a way through the ordeal. But had unrealistic, naive hopes to be much better by now!!

I have been attempting a "no moisture" withdrawal on top of the steroid withdrawal!  How exciting!NOOOTTTTT!!!!
The first week was hell!  I am not about to lie to you folks..  I caved a bit and put a little coconut oil on my face.  But really not enough to do much.  Now a week later...I think my hands, arms and neck are ok.  The upper lip is THEEEE WORST.  So stinking uncomfortable...  One positive I am noticing is that my "face" skin is starting to look nicer. Has a bit of a glow and "smooth" look.  I don't wear makeup in my pictures for this...so when I look at the rest of my face it give me a tiny glimmer of hope.  One day all my skin will look like this! (insert happy dance)

Something I want to discuss  is the DEPRESSION of TSW.

It makes you super depressed.  It can even give you suicidal thoughts.  It can make you down right hopeless!! The emotional toll it takes on ones mind is unbelievable. And what can make the ordeal even more unbearable is that those who  are around us are likely to belittle or not understand your experience.  HOW FRUSTRATING.  Everyone can sympathize with cancer, a broken leg, the flu, but TSW? Uhh what's that? People just don't understand.

This can send the sufferers' mind into a tail spin.  When you begin TSW you become STUCK.  Now you are in the biggest predicament of your life.  Either you tough is out and go through a living hell for a couple years and when it gets bad you battle with wanting to go back on the corticosteroids or you go back to steroids.  But you now know all this 'new information' about how it's super bad for you and will land your right back in topical steroid withdrawal.  *Sigh* One just feels like they are between a rock and a hard place.  Nothing you can do.  What a hopeless place to be in! But on the contrare my friend.  The longer you just do nothing in TSW the closer you get to healing!  So although you feel like you are helpless to fix the situation, each day, each week, each month, you simply do nothing and stay away from those nasty drugs...perfect skin awaits you!!

It's coming guys!  I don't know when, I don't know how....but it IS coming

Here are some pics for you guys...
Here are my lovely hands after 1 week of moisture withdrawal

My pointer finger has finally closed up. No oozing

A couple days ago...yikes

not sure what this is? my neck or my arm..lol not so bad though

Meet Nikki from the forum...gorgeous girl. 8 months into her withdrawal with mostly tsw on her body

Nikki's TSW effected hands.  


upper lip today...better than a couple days ago....I encourage everyone take pictures!!

I also wanted to upload pictured of my friend who has been healed of her eczema. 
To make a long story short though, she too stopped using steroids.  Didn't know about steroid withdrawal though.  Went through a rough time where her eczema was really bad and then it just started getting better?  Sound familiar any one!! I was so encouraged that she healed! It means we all will :D  She told me something that helped her was to find something that stops the itch.  She is into natural creams and butters.   Also she uses a water de-chlorinator(she gave me one).
I will let you know how the change in my water has an effect on my skin.

Happy Healing Folks
Here is her arm, she only started taking pictures as she noticed it getting better.  It was much worse


Her healed arm!! :D


leg almost healed
leg healed




Saturday, October 5, 2013

8 months in!

Well here I am
8 months in...can't say much has changed.
I have to admit i thought I would be much better by now.

My most troubled areas now are my mouth area &my rotten hands.

*sigh*

This month has had ups and downs...
More downs than ups...wondering when this will be over...

The photos look better than I feel...mhh

Thursday, September 5, 2013

7 Months In

Hey all

Well I am 7 months into my withdrawal. Time is starting to pass much more quickly now.
My skin has been a bit stagnant and cycles through bad and good.  I guess that's to be expected.  I think I am going to start posting monthly, because there really isn't much going on...other than me becoming more and more fed up :/

UPDATE!



Neck- can any one day old and wrinkly? Oh and very itchy :/ Wow , I just took this picture of my neck, I didn't realize it looked this bad...thank God for scarves!!
Arms-rashy with some scratched up places.  Still get very itchy there. Also dry
Wrists-come and go-currently they are scratched up

Hands-healing from the 'rotting finger' look
Here is to next month better pictures :)
Face- forhead a bit wrinkled and dry
      - upper upper lip and lower- A MESS! Ozzy, then dry, then flaking, then cracked and repeat
If you enlarge this photo you can see the beads of ooze coming from my lips...lol YUMM


Saturday, August 24, 2013

A bit down

This past two weeks have been challenging
My skin has given me a bit of trouble but my emotions have given me more trouble.  Just trying to get over the six month hump, I guess!

I have successfully (ha) been off steroids six months now. Somewhere in my naive, optimistic, unrealistic, fanatical world I thought I would be healed by now or atleast close!  What a moron!!!??

I think that stupid expectation is why I am having a bit of trouble this month. So here is my little advice of the hour...don't set a healed goal date!  When you get there and you aren't healed...you will be depressed!  Believe me, been there, done that, and if there was a T-shirt I would buy it!

On the bright side... I am six months in baby! That means I am six months closer to healing!  Hoping to be over the worst of it!  And it means I can do this for another 6 months. Take things in increments. 

Skin is doing alright. A little hivey today because I forgot to turn the fan on before my nap...woops! I am sure it will go down my morning though. My flaring finger is healing up. My neck is super dry.  Hoping for some flaking and new skin. Upper lip is a bit smoother.  Hands look like they are 80 which is better than 90 lol!

Hope you are all well!

Keep trucking on!
Xo

Tuesday, August 20, 2013

OH Mister Sun, Sun Mister Golden sun...

Yesterday I braved it, and went to an Amusement park with a few friends!  We had a great time.  This was my first time really exposing myself to sunlight since early on in my withdrawal.  Crazy me, instead of hearing Dr. Rap say in the videos "in the later stages , sunshine sunshine sunshine"  I heard "sunshine sunshine sunshine".  That went very badly, I flared and flared and flared some more.  So for the past 3 months I have been hibernating from all sun rays.  My skin has still be on and off, but at least the sun wasn't to blame.

Yesterday was HOT HOT HOT and the sun rays were beating down on my skin.  I brought a sweater and hat, for the times I felt it was too much.  It really felt SOOOOOO god to have that warms sun on  my skin.  But with each minute that passed, I  was  nervous of what the next day would bring!?? Flare central would be my guess?

I woke up this morning..and well my skin was a bit tight, but no flare.  My skin is peeling lots-YAY! That means I am entering a quiet period! Or so I hope!! So I think, I think, I can go in the sun a bit more :)  Which is super exciting because I have been "inside" all stinking summer!

Another thing I have been doing is keeping myself well wrapped up at home.  I take my shower, but on a layer of moisturizer and  bundle myself up.  I find I makes me warm, so I sweat a bit which makes my skin feel less tight. Also the skin seems softer when I have had it bundled up.  Notice the skin that is usually covered up is the smoothest?  So I am trying to keep my skin protected and much as I can.  Also when I am bundled up I don't have see my skin...makes a happier me! :)

Hope you are all well! :)


Friday, August 16, 2013

Skin Update

Well...it could be better and could be worse
I will let the pics do the talking..
Not in the mood to make anyone laugh via blog post today!

Here is to a much more manageable weekend!!!!!

Tuesday, August 13, 2013

Flare Theory According To Vee[Revised]

Inevitably during tsw you are going to...(insert scary music) Flare!  Flaring is no fun, and usually looked at as a negative experience.  So I want to shed some light on that terrible flare.  Now I am not a doctor, nor am I the most medically minded.  But if you activate your common sense you can come up with some logical thoughts.  Every time I flare I use these thoughts to bring some comfort :)

Now for me my flares go in this order

1)Sore/Tight Sensation
2)Inflammation and Redness
3)Cracking, Oozing 
4)Flaking and Dryness
5) New Skin

Here's my little theory...story

We all have little nitricoxide villains lying under our skin.  Just waiting for the opportune time to make their escape. They look for weak links in our skin and days when our body isn't up for the fight to break free.  As they hide in the confines of our skin our skin looks for ways to get rid of them.  All of a sudden our skin feels sore and tight, like something is about to erupt from under it. Our skin is looking for a way to make an inhospitable environment so they are forced to come to the surface.  .  The skin begins to get inflamed and puff up.  The nitric villains are excited as the skin lifts higher and higher up, giving it more room to break free.  The only problem is there are no holes in the skin to allow for the steroids to get out. So the skin sends scratchy sensations so that we will scratch and create openings for the steroids to leak out.  Finally the nitric oxide is free and able to weep out of our skin.  The skin starts to look worse and worse as more and more nitric oxide comes out of the skin. Then the the villains retreat.  They lost enough of them in battle, so they hide back in reservoirs of the skin.  The inflammation comes down.  But our skin is no longer normal.  It looks wrinkled and dry and old, the body continues to send itchy sensations so that we will slough away all the dead skin.  And before we know it brand new skin appears.  It may not be the last of those flares, but with each flare the nitric villain count decreases.  Meaning each flare brings us closer to our healing!

Well thats my little theory of what happens when I am flaring.  Probably has no medical premise, but it sure gets me through the flares :)

Hope you are all doing well!!

Friday, August 9, 2013

The Flare that won't Quit!

Uggh so I am a bit annoyed today! I have been mildly flaring for about 1 week.  Last night I got that classic burning sensation that comes with TSW!  I haven't had that in a while. I actually laughed while I burned.  I just couldn't believe I was experiencing that again. My skin has been very tender. Thankfully it hasn't interfered with my sleeping.  Also I am sick with a summer cold and sore throat. And today it seems like I am losing my voice! Yay!  Lool!

I am 6 months into my TSW!  I am getting a bit tired of it.  I have moments where I am OK, and don't mind it.  But then there are days I just want to have nice skin.  I hate the unpredictable flares.  It causes much anxiety when I have plans for the weekend that involve me looking pretty. 

Over all my TSW experience has probably been a 6.5/10 as far as severity is concerned. I have had about 1.5 months of absolute hell and the rest has been more manageable.  Now that I can sleep without effect I am much more mentally able to cope  I only wake up once a night to have a scratch fest!  And usually it leaves no damage.

I find my skin is taking long to ' smooth' out. My hands continue to look old and wrinkled. That and my neck. I know that part can take a while.  I just get a bit inpatient at times!: (

On another note... I have been putting my wrinkled fingers to work on my piano. Learning different styles of music. I am focusing on jazz and gospel at the moment. I am more of a contemporary piano player so I want to broaden my playing. I actually start lessons today.  Really excited about that. I have been playing for about 8 years.  Any other TSW piano players out there?

I am dreading playing piano in front of him and showing off my 90 year old hands!  Hahaha

Have a great weekend! Xoxox

Sunday, August 4, 2013

Update and TSW camouflage!

Hey all!

I havent been around for the past week. Super busy with events and summer stuff.
Anyhow a brief update

Skin is doing alright.  I flared this weekend.  I have noticed the second I stop using my fish oil I flare.  It has a steroid effect for me. Really calms my skin down.  Upsetting though because it cost quite a bit each month.

I had to go to a 25th anniversary banquet this past weekend with flarish skin.  Although in the photos you can't tell, my skin is inflamed.  I tried to just rock it anyway and ignore the fact my skin wasn't silky smooth like everyone else's.

One thing I try to do with during TSW is highlight my none TSW affected areas. So I wore hot red lipstick to draw attention to my face and not neck. A fascinator to draw attention to my hair and not my arms.  Smooth silky dress material to create an over all smooth look.

Check out the pics and see how I kicked my flare in the butt!!  How do you find ways to 'camoflauge' your skin?

Thursday, July 25, 2013

FREQUENTLY ASKED ANNOYING QUESTIONS



Well I'll be a horses saddle, I can't believe it's been six months I have been off TS. For anyone who has suffered with eczema, you know this is a HUGE deal to go this long without your meds.  In your mind when you are addicted to meds,you can barely go a couple days without your cream, never mind months on end!

What amazes me is that I don't look like a monster.  Yes I have had some ugly moments, but there is a pattern of healing and improvement!

When going through TSW, you have many people ask you a million and ten question about your skin. Here are the questions I have been asked, and how I answered them.  Forgive my sarcasm, I am a pretty nice person! LOL


QUESTION:What's wrong with your skin?
ANSWER:(uhh rude much...insert fake smile) Ohh it's eczema, well topical steroid withdrawal

QUESTION-What's that?
ANSWER-(since when are people so interested in my life?LOL) Basically I used steroid creams for my skin my entire life, they stopped working and the only way for  my skin to get better is to stop using them and get the steroids out of my skin.

QUESTION:Oh there isn't any medication or creams for it? (
ANSWER:(Didn't i just say,,,sigh, never mind...insert fake smile #2)  No unfortunately I just have to tough it out.

QUESTION:Have you seen a doctor?
ANSWER:(insert my fist in your face, right about now...hehe, insert real smile and the thought of that) I have seen a doctor yes.  They can't do anything

QUESTION: How long will it take to go away?
ANSWER: (what you think I am phycic?..)Not sure, a year or two.

QUESTION:I have eczema too(tiny patch) I use this for it and it helps, would you like to try some? ANSWER:(chuckle to self, of course its steroids) Oh no, I can't use any topical steroids because they make my skin worse.

QUESTION:But they don't make my eczema worse ?
ANSWER:(inside screaming THEY WILL) Well have you ever tried coming off them for a period of time and seeing if your "patch" will go away on its own?

STATEMENT:Oh yes, but then my skin gets really bad, so I used the creams to control it

ANSWER:I think you're
ADDICTED!!


I think it really blows peoples minds that we would subject ourselves to this, when we could just up the anti to our medication and have seemingly clear skin.  There is such a lack of knowledge regarding steroid creams, and often when I discuss it with others, it seems like I am speaking a foreign language.
I know someone who went swimming and they have eczema.  Now that's so painful during a flare, and probably not the best idea, but "dear doctor" said it was fine!  I said the same doctors that will give you steroid creams!  Doctors don't know much about eczema  They may know a thing or two about some other things, but I must say their lack of knowledge in this department has caused me to be a bit "leery" of their advice in other areas!

Why do I put myself through this? So one day I don't have to anymore!  Eczema is an incurable disease when you use the treatment for it!  TOPICAL STEROIDS.  But eczema is curable if you just LEAVE IT A LONE!

Also check the labels of things, cortisone is in a lot of over the counter creams and makeups!  That should be against the LAW!  So please, please, please, be careful as you wouldn't want to set yourself back! Or develop an addiction unknowingly!


That was my 5 cents for the day!! Have a great one!

xoxoxo
VEE
Here is a little before and after :)

3 Months IN
6 Months in










Wednesday, July 24, 2013

Skin Pics-Good lighting

As promised, I have attached some recent(today) photo's of my skin!

Funny Story:I was sitting at a red light while taking these.  I looked down at my skin and thought "mmmhh this is perfect lighting for a photo"...and click, click and a  honk from the car behind me later...and this photo shoot was born!


My skin feels decent, I was a bit itchy, but I had gone jogging so I think sweat contributes to that.  Some placed on my skin love the sweat (fold of arms, wrists, face and front of neck).  The other places like upper back and back of neck are completely dried out by sweat!  Ahhw well!

These photo's acurately portray what my skin looks like! :)
My upper lip and lower chin were having a good day! :)

Here I am, no makeup-not to shabby for TSW.  Neck is still a bit dark

My hands and wrists....what a turn around form earlier months

Folds of arms have been sweating like beasts, I think that is leading to faster healing in the area :)