Tuesday, March 15, 2016

TSW FREE!

Hello long lost friends!
It has been such a long time since I have posted.  I have not forgotten my fellow tsw suffers...however life happens.  Since my last post, I have had a precious baby boy and bought a new home with my family. Nonetheless I wanted to give a skin update!

Just like the title suggests...I believe I am TSW Free!  Hurray!  However...I would not say that I am eczema free. Anyone who has been or is going through tsw, knows that tsw is worse than any bout of eczema.

So whats the difference?
I no longer have full body breakouts. NO more red hot itchy skin.  NO more being debilitated and forced to stay in bed surrounded in sheets and scarves. NO more itching fits. No more shedding dead skin flakes everywhere...and No more thinking about my skin ever second of every day!  HURRAY TO THAT!

However, I do still have some eczema spots on my body.  Namely my hands, neck and back of elbows from time to time.  Why I would say this is not tsw?  Because it clears.  Where as before nothing EVER cleared completley.  It also doesn't spread.  The spots stay confined to their areas...even if I itch.

After 3 years of this, I can't say this was my target goal.  I naively thought my skin issues would be no more. Sadly after the trauma of tsw, I can settle for this.  I do hope in time I "grow" out of my eczema.

For the time being, I am thankful to be over the hurdle of topical steroid withdrawal.  Some things that have been helpful to me since my last post have been using Queen Elizabeth Cocoa butter.  It's not natural, it's prob not even the greatest thing for you...but since using it I have seen notable changes in my skin.  It's also very soothing when I am having an eczema flare up.  Maybe it may not be the best thing for you...but I just wanted to share.

Another thing that I started doing was using unscented products.  My laundry, cleaning products now are all natural.  It's hard to say this is what's helping or not because also a lot of time has passed, so it could just be tsw has run it's course.  These two things however, I have been doing for 8 months to a year.  Probably longer than anything else I tried.

I was taking fish oil for about 4 months and that was very helpful too. Eventually, I had to stop because I couldn't handle the taste anymore!

My next challenge to to reduce my sugar intake.  For me I have noticed a correlation between the two.

Anyhow, this has been a bit longer than anticipated.  I hope all of you are doing well and holding on. I know this isn't an easy journey.  I honestly can't even look back at my old photos or read my previous blogs because it really hurts to think I went through that and there are still people suffering way worse than I even did.
I really wish I could handle being in the forums and encouraging people and I salute all those who still do. Please don't think it's not that I care...I didn't realize how traumatic tsw was until I was over it.  DUring tsw I some how had strength.   It's hard, but some how you get through.

 I will check in from time to time via blog.  Anyone out there going through this you are truly my hero!  You have more strength than you know!!  Keep it up and feel free to message me on here anytime :D

Pictures below!
my upper lip is pretty much healed.  Just discolored.  But skin is normal

Today my neck is a little itchy, the skin has lost it's elpehant like look, just discolored

As u can see the skin color difference.  Chest is no longer red and rashy

U can see the lines on my arm again :)

My eczema ridden hands...gotta love them
The don't split and bleed like they used to



Me & my baby boy :D

Me and my oldest :)
Bare face...just eye makeup...come a LONG way
Celebrating my 30th birthday! No scarves...no sleeves! :D

Me an my baby girl all dressed for church

Saturday, January 24, 2015

A much needed Post...my rendezvous with betnovate!

Wow...has it ever been a long time since I last updated on the hum dung details of my skin...and truthfully the updates haven't been anything inspiring or exciting!
SO here it is...the update I am sure most you want to read...

To start I am  over almost 2 years into my tsw journey....or is it 3 years...lol heck it's taking so long now I have no idea how long I have been doing this....I just know its been a LOOOOOONNNG time.

AM I healed? Nope! LOL
AM I  better...uhhh not really but kinda...will explain further
Have I used any steroids....Happy to say yes, I tried them...and I will explain that later too!


SO nope I am not healed...boohoo...but after 23 + years of using steroids I guess I have some more time to put in!

Am I better?  Well, I was and then I got sick and everything spiralled out of control.  Then I got pregnant and things got worse!  As my skin got worse and worse I started to contemplate going back on steroids.  It meant a lot to me to have a good pregnancy...this will be my last one...I just didn't want to continue to suffer...

So I got that wonderful script that you dream about in the heat of tsw.  I couldn't believe it...I was going back!  I felt a bit nervous about the whole endeavour, but the pain and debilitation of tsw had taken me as far as I could stand. Day 1- I applied the sweet cortico steroid ever so sparingly.  I feel likeI am putting poison on my skin...cause well DUH I AM!! I notice no difference.  Day 2- I apply a touch more and hope for the best...still itchy. I continue this for the rest of the week each day finding not a thing has changed.  One of the days I did feel a little less itchy but that could have been a fluke.  I stop the cream for a week or two....skin continues to drive me nuts the way it always does...but no new withdrawal symptoms. I decide maybe I need to just slather it on...hey I am desperate.  I can't believe I am actually doing this!?  I take a scoop in my hand and slather is all over my upper body...expecting a relief any moment.  Nothing happens...

It hits me...the steroids just ain't gonna work for me no more!  SO after using about 50grams of betnovate I finally kick the hardly new habit again.  Thankfully with no new withdrawal symptoms...but I feel empowered now.


You see in my darkest hours of tsw...steroids always call my name...but not anymore. I answered their call and they proved their deficiency.  And if I really wanted something that worked I would need to use some orals or injections which never were appealing to me...as I have seen how those withrawals look!

SO I am back to the drawing board...but I don't feel trying steroids for those two weeks or so had an effect on me at all.  And in the last week things have been getting better.  Maybe my pregnancy hormones have calmed down...maybe healing is finally on the way...maybe I am just having a quiet period...none the less I am still in the game!

The state of my skin now is just very dry.  I am a walking dandruff machine...I leave flakes everywhere.  I used to read about that...now I am that girl! LOL
But inflammation is down, soreness is down.

As for things I am doing to my skin...not much. I do use cream sparingly.  I know I know...but I do.
And the less I use the better...I drink plenty of lemon water.  Something about it being alkaline and eczema patients having acidic bodies.  Whatever that means...seems to have proven helpful to me.

I am so tired of this journey but I have now accepted its the journey I am on...no choice in the matter. Some days I regret starting tsw as my skin is way worse now than it was to start...but hey at least I am not pumping my body with all the crap.

The most annoying symptom I have right now is an itchy dry face.  And if I apply any cream it burns...I am a little annoyed that my face is affected...but if I lotion up good and bare the burn it looks somewhat normal.  My skin color hides a lot!


So folks...there is my update...that's what I have been up to!  I look forward to summer as it seemed to really help my skin!

Hope you are all still pushing on and all the best!  When something changes I will be sure to update you...but at this point it makes no sense with monthly updates as not much really changes month to month and if it does can be undone within days!! LOL






CIAO


Thursday, October 2, 2014

18 Months

A year and a half already!

I have not used topical steroids for just over a year and a half. This morning I wake up with calm skin and can see signs of promise. Though I have been down this road many times, it reminds me that healing is coming.

Now my skin is at the point that I forget about topical steroid withdrawal. Not because my skin is way better but because I have to learn to 'live', to 'cope.  And each day it gets easier.  Some days its tough again... But that subsides.

At 18 months mainly the symptoms I am dealing with are ' extreme itching'.  In the middle of the night I often wake up can scratch till I can't scratch any more.  Oddly this scratching feels different than precious scratching. Almost like a healthy shedding of skin.  'Shedding' I shed way more skin than ever at this point...but the skin left raw...seems like strong healed skin.
Elephant skin...uggghhh this is so annoying... But my wrists, neck, arms, fingers, upper lip are elphanted to that max.  But the inflammation is way down this month, making it less noticeable... But of course I can see it!
And my last common symptom is hives..
What in the world? I was getting hives quite a bit this past month and read that that can be a sign of healing. I really wonder why?

The weather has gotten much cooler in the city I live which is a bit nerve racking for the TSW sufferer. I am quite interested to see what winter brings skin wise....but here's to healed skin! :D

I attached some pictures this time...skin doesn't look the greatest... But I feels fine right now. 

Saturday, August 30, 2014

17 months into TSW

Wow where did time go? Or the summer for that matter?

It's been quite the summer for me filled with many ups and downs.  I think those ups and downs def took a toll on my skin. 

In the up moments I benefited with good skin and the down moments...well my skin just tanked.

I had two major flares this summer

First one came when I came back from my trip to Arizona.  Basically I wasn't eating very well, had some stress in my life and resumed using some creams..
Stuuuupid... But I did it!

So I flared. It was miserable.  But because of everything going on in my life my bad skin was last on my mind.

Then came flare number two which I have only just recovered from. 
This one was because in July I had to have emergency surgery due to internal bleeding.
I was given a lot of drugs and had to take drugs for about 2 weeks after surgery.  The pain killers side effects of course were itching.  So my skin tanked.  Plus the stress of surgery and all I went through just took a huge hit to my skin. I was also eating ridiculous amounts of sugar which I hadn't been previously so the combo of everything was an over all NO NO

So here I am...17 months in, recovering from a flare, skin is stable now.  But just annoyed to still be here.  I start work teusday and am just hoping my skin behaves for the winter!:/

I don't have any exciting hopeful messages for those suffering, I guess I have gotten used to the suffering.  It hasn't all been bad...I had some really awesome breaks where I thought for sure I am healing. I guess I am healing but setbacks come.

I  am not attaching any pictures because my skin doesn't look anything special.

As for symptoms itching seems to be the strongest symptom lately. Very itchy on my wrists and arms.  Also flaky central.  I am walking dandruff... Lol so gross eh?

Maybe not that bad...but my skin sheds a lot.  Also sun is no help anymore. At first it was...now it just makes matters worse I think :/

Hope those who are suffering through this topical steroid withdrawal are doing well!

One day eczema will be a thing of the past for us!

Monday, June 23, 2014

14 Months In, Travelling with TSW

Last week I went to the hot, dry dessert of Tucson Arizona for a little R & R....i.e Bible Conference.

I was pleasantly surprised that my skin didn't bother me at all on the journey.

When I first arrived I was a bit nervous about the water and dryness...hello?

To my pleasant surprise my skin was FINE.   Maybe a little dry, and I must confess I cheated and used a little lotion. But sorry my dry arms just weren't looking very hot with my sleeveless shirts y'all!!

I am getting to a point that I can feel my skin just chilling out.  Who's to say a big flare isn't coming for me come season change, but for summer I can see that my skin is pretty consistent now.

I do, do moisture withdrawal and since being home have gone back to not using lotions and am fine.  Even when I used them on my trip it was very minimal and for aesthetic purposes only! LOL

I rarely think about my skin each day.  There are times it looks a little dry and crusty, but it's nothing awful.  I don't need to wear scarves 24/7 and it seems that the sun has been of huge benefit to my skin.

For all those still thuggin it out, be encouraged.  TSW does burn out and get much better with time.  I used to hate hearing that, but after almost a year and a half I can agree time is a very big healer.

My main skin issues now are discolouration, though my tan has helped and elephant skin.  But I can see how that has improved in some areas.

Be encouraged folks!

Here are some photos from my trip



Tuesday, June 3, 2014

14 Month Steroid Free

Oh how good it feels to be in the double digits of withdrawal.

Just looking back at the hell of this time last year gives me shudders. Yet helps me appreciate how far I have come.

Summer has come and brought with it great skin for me.  While I am enjoying the sweet kisses of the sun rays, I am a bit nervous of what fall will bring!  I wonder if my skin is only better because of the good old vitamin D, or has time began to run its course??

I guess I won't know!  For now I am enjoying time outside.  I still continue MW.  I had a point where I thought I was going to stop cause everything felt like it was worse. Then I put a little cream on and experienced 'worse'. Lol

About a week later my skin calmed down.
I have been doing MW for 2+ months now.
My 'normal' skin is awesome. Quite clear the oils have returned. My skin has a natural shine it never had unless I used lotion.
My TSW effected skin is rarely dry and ashy.
Just looks a big lizard like. But that's from all the damage from scratching.

I have noticed some spots begin to recede. So it's hopeful.  My skin no longer stops me from doing anything. It's quite predictable. Even a couple weeks ago when it was flaring I was still able to go out and do what I needed to. I think I was just a bit emotional about what it looked like.

It's very important not to focus too much on how it looks. Though that's nearly impossible... Especially for a lady!
But when I just say 'what the heck' and embrace my skin, I am mentally in a better place. More recently I have started dressing up each day. You can see this blog for that post and challenge.

Do your best to just feel good about yourself. If you are right in the heat of battle...maybe this isn't your season. I spent many a season in my sweats and under a blanket...

But summer has come and for that I am thankful.
All my TSW warriors out there, keep on fighting the fight. You can do it!
And a shout out to Nikki who encouraged me a couple weeks ago when I was very down about my skin!  Having each other makes a big difference in the battle!

Xoxox
Vee
Here are some pictures of my skin!!