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 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 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!

Here are some pictures of my skin!!

Friday, May 2, 2014

13 months off Corticosteroids

Wish this was over already!
Here I am, another month in.  This month was a bit tougher because I was flaring.  Got over my flare and then flared again.

I am doing MW.  So suffice to say MW does not prevent flares...but no one said it would.

In the last couple days I have been very very itchy and done plenty damage to my skin.  Also I have not cut my nails... So I know that has plenty to do with it.

As my skin has gets used to MW, and granted a bit better, I am really noticing how bad things really are.  Like how discolored my skin is.  It's quite discouraging actually.
I feel like my skin is so messed up!!:/

Also lately my face has been super itchy.  That's new! I have to really try not to scratch my face because it scars so easily.

Though I feel much better overall, I am growing a bit weary this month in the journey.  I am thankful for last month though. I had a great month, you win some and you lose some!  Here is to next month :)

Thursday, April 24, 2014

1 Month of Moisture Withdrawal

This is my 30 day account of how not using lotion on my skin went!  The process is called moisture withdrawal, and is supposed to be helpful for my skin condition.

Day 1 Not so bad-took shower at night... Was surprised it wasn't awful!

Day 2- Stretched. My shower... After shower it was rough.. I guess the reality that I am not using cream hit my skin.

Day 3 Redness and inflammation down, but very uncomfortable face feels and looks good though

Day 4 Tough day... Feeling dry and a bit itchy... But wounds have healed up...seem to be shedding lots of skin...

Day 5 Skin is comfortable... Main issue is dry ashy look :/ But I feel pretty good...I take a really dry for about 1 hour... Then it all sheds off and I am good to go! In one week I can see that my skin has gotten better...this is NUTZ

Day 6- Was awesome. Skin is great. Every time I get out the shower it's not as painful. Skin restores itself quite quickly.

Day 7 Woke up with some deeper cuts and splits on my hands. Some redness too but my face skin feels good...arms are fine I washed my hair and oil got on my hands so I am thinking it's a reaction to that.

Day 8 Serious swelling :/ in hands ,felt good after shower

Day 9 Skin is prb 30% better than last week little to no discomfort... You get used to that dry ashy feeling... And I barely scratch now. When I do its not intense. Also I use some dilute avc for any cuts or itchiness.I find I am sweating much more. My skin will look ashy and then the ashy look will fade.  Assuming oils are returning :0

Day 10 Skin is just fine. A little dry and wrinkled, my appetite has Had some blisters on my fingers. Over all quite comfortable... Look a little ashy in places

Day 11 Skin was good, a bit dry in my neck.  Was in the sun and felt a little more itchy than usual afterwards. Didn't take a shower Skin over all is pretty comfortable

Day 12 Woke up today dry. Didn't shower yesterday so that's prb why. Thumbs are looking much better, broken skin minimal, no redness. Neck is just dry. Still have yet to do a dead sea salt bath as I don't have any that don't have mineral oil in it

 Day13 Breeze! Lol Eyelids are bit dry this am, feeling better this eve. I must shower to get good results the next day. Otherwise skin feels yucky. I actually look forward to my showers. I am 1 year of steroids today. Yay

Day 14 Skin feels so normal hardly think about it. Getting out of the shower doesn't even feel that wierd anymore. Skin gets a bit dry now, not rough like it used to. Skin even has a shine. Oils are returning.

Day 15 Feeling great today, looking a bit dry. But nothing compares to how good I feel! I can see certain spots of my skin are actually healing on my hands.

Day 16 Honestly my skin is a non issue. Starting to feel day to day updates are pointless, but I will keep it going Skin is normal today. Neck was itchy last night

Day 18 Missed some days cause there wasn't much to update. Skin felt really good today. Even got some sun. However very crusty out the shower today. Hands are peeling ALot. Face looks a bit red and yucky, we will see what the morning brings. Feels a bit strange to be this dry, but not painful. And I am not itchy at all..

Day22 No complaints, skin is a bit itchy this morning, but I have been in the sun a bit more. My right hand is looking really good. Left hand healing a bit slower. Still nothing compared to before. Skin feels so normal I forget to update,skin feels smooth, not dry at all. Just a little dry when I come out of the shower, serious improvements from day 1-5

 Day 24 Skin feels great. Using lemon juice on some dark patches hoping to make them fade away. My skin looks pretty good. Went out without a scarf. This is a huge accomplishment

Day 26 Itchy day, got out of the shower and it took a long time for my skin to normalize. So so itchy...not the norm itchy but a hivey itchy

Day 27 Still itchy, woke up with a swollen eye. Ohh I am flaring... Haha totally forgot about those. But it was bearble. I layed in bed with ice on my eye this am and then was fine for the day. Now am itchy again this evening. Neck and insides of arms. It's easter weekend and I have also consumed plenty of sugar and bread...this could be why?? Lol If this is what a so called flare is ,its a piece of cake to my other flares. I was out today in the sun, running errands....completely uneffected by skin issues I truly believe MW contributes to more comfort during flares...well in general lol

Day28 Still flaring, time of the month came today.... Usually a flare culprit. That coupled with a sugary easter weekend. Found lime or lemon juice very helpful for reducing itch on my arms. Still using lemon for hyper pigmentation, I can tell I am healing because the things that were secondary issues for me before are my main ones. TSW really jacked up my skin. Now I am really seeing the effects and damage done. Was in the sun yesterday and super scratchy last night. Noticing a trend with sun making me more itchy??

Day 29 Normal day. Used lemon again and actually used it on the inside of my arm. Helped reduce itchiness. Didn't shower, so skin is looking wrinkled and dark, need to shed skin

Day 30 Feeling good today. Recovering from my flare. Woke up this morning and showered, which usually I hate doing cause it means I have to walk around and feel the dryness, as apposed to staying in bed. I am a bit uncomfortable. Maybe a 3/10...huge improvement.

So after doing MW for 30 days here are my thoughts
1) Redness is gone
2) Inflammation down 55%
3) Am able to function like I have normal skin, the day passes and my skin doesn't come to mind
4) Patches are drying up and healing faster

Some set backs for me are when I do my hair, I use oils in my hair, so my hands get super itchy and break apart almost immediately. When I sweat I also get super itchy and tear my skin apart. As long as my skin remains dry, I am good. That's a bit of a challenge but I try my best to work with it. Natural oils have definitely returned. I get a shine to my skin I never had before. I have applied Shea to my face every once and while. I do find since my face is always exposed to the elements it stays dryer and takes longer to recover from showers than the rest of my skin.

Well that was my journey through 30 days no creams,no lotions, no oils...shall I continue?  Yea I think so...

Thursday, April 3, 2014

1 year steroid free

So its now has officially 100%, been a year since corticosteroids have touched my skin!
What a milestone... Anyone who has been through 5 minutes of TSW knows that year of this is a HUGE victory!

I had begun to write this post two weeks ago. It had a very ho-hum depressing tone. But an interesting turn of events has lead to a more chipper post!

So since my last post I was not using as much creams...but was still using enough. How I dreaded showering...I hate the feeling of lotion on my skin.  I hate the feeling of greasiness. So I started to use a bit less each day. And oddly when I woke up in the morning when my skin was the 'driest' it felt the best. 

Then I received a 'friendly' reminder about the effects of 'moisture withdrawal'. For those new to the term, its basically cessation of all creams, lotions ,oils and the like.  Sounds like a total nightmare for an eczema patient.

We are so conditioned to think dry skin needs lotion.  Seems completely logical.
So after my 'ftiendly' reminder about MW, I decided I was going to do it full throttle for 30 days.  I have never done MW completely...I think at most I did it two weeks...and certainly was cheating on some days. I had tried it earlier on for about a month, but now that I think about it was doing baths with oils in them and once again cheating.  Also I was not mentally as strong as I am now. Tsw can take a toll on your pain tolerance... So I completely understand how one would not want to subject themselves to any more pain.

I have been doing MW for about two weeks now.  And will be posting a day to day update of my 30 day MW journey, but this is just a little summary.

At first it wasn't as bad as I thought. I would wrap myself up right after I got out of the shower and attempt to stay warm, so my skin wouldn't dry up like the dessert.

Then things started to get tougher.  My skin was sweating randomly and then I started getting deeper cuts in my hands. That wasn't very impressive but only lasted a day or two.

My day 5 I was cool. I looked forward to showers...I love how the skin drys out and then flakes off and reveals smooth skin.
My skin looked way better.

I am a chronic scarf wearer and have had no need to wear one at home now. Or to bed.
For the first time since summer my skin feels like it's actually healing.

Now this could be because I am a year in..
And I am sure that plays a part. But for the past 6 months...nothing has improved, and within one, two weeks of not using my trusty creams all has improved... Yah, I think MW has just a tiny part to play in that haha

Now when I get out of the shower my skin doesn't get all tight and gross. I honestly can't believe this.

My redness is way down, scratching way down... Shedding... Way down... Lol

So I encourage you if you haven't tried MW, do it...for 30 days. I read someone said...we are already uncomfortable using the creams...

I wish I had been more determined the other times I tried it.  But hey we live and learn, nothing before its time... And lucky me spring has sprung so I will be getting some sun and warmth as well.

I just want to express how happy I am!  How normal my day and life feels

The draw back with this is that my skin looks quite ashy. So I kind of hate going out because I look drier than usual.  But as each day passed I can see its getting better.  One of the days I was quite depressed I looked so dry, but then I thought about how bad I felt with lotions. So its a trade off. If I feel good, I am not as concerned with how I look.

At 1 year in I thought I would be healed, but atleast I feel good at 1 year in!
I can deal with feeling good!

Here's to what 18 months brings!!
These pics are all about 10 minutes after showering... So this would be the driest point, and most uncomfortable time.  Everything feels good, my neck hurt a bit to look up like that but if I twist my head a couple times the feeling goes away. Or just massage my skin!

Monday, February 10, 2014

Promised Photo's

Here are some shots of my skin at my unofficial year in!

Ugh kinda discouraging.... Some parts seems my hands... Tsw has spread all over my hands and wrists since last year!

Yikes!  Summer please come and take away the withdrawal!!