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?