Friday, May 31, 2013

How to cope with Looking like Freddy Kreuger?

The villain who scared me to death as a kid and would torment me in my sleep visits me in the mirror every morning!  I guess I am exaggerating a bit, but lets face it TSW doesn't make us look like "easy, breezy, beautiful cover girls/guys" now does it?  Freddie is a bit more comparable   But how do you deal with that? The stares, glances, sympathetic looks, how do you deal?  And then there are the question and the "oh I have eczema too"(as they show you a tiny dry patch on their elbow).  How does one really cope?  Well you do or you don't but here are some of the ways I have coped with looking like my GREATEST NIGHTMARE-LITERRALLY

1) Reading others blogs going through the same situation-not that I wish this on anyone, but misery really does love company and it helps to know I am not alone.

2)Dead sea salt-this has been the ticket for me as far as redness and inflammation are concerned. My skin is always notably smoother and less dry after a dead sea bath.  I have tried epsom, but dead sea has been WAY more effective for me personally, and you can't use epson salts in the long term, but dead sea salts you can!(I actually plan on jumping in the bath right after writing this)

3)Having a Motto-"Don't make long term decisions based on short term circumstances" "this too shall pass"-whatever floats your boat, but you will need some sort of one liner to hold you through those HELL flares.

4)A search for inner beauty- I thought I was a pretty humble gal, didn't think the media really effected me much...ha what a joke that was! The second my skin started to get iffy, I was ready to jump of a balcony (a one story one of course! LOL) The only way you will get through looking like a nightmare is to find real beauty within yourself.  And sadly real beauty is what many of us are lacking in this shallow world.  Real beauty is exemplified in acts of kindness  good character,  inner joy and a love for life and people.  I think out of all my suggestions-this one rings home the hardest.

I am off for the weekend! I hope everyone enjoys themselves, and try to live a some what normal life this weekend! You will be glad you did! xoxox

Thursday, May 30, 2013

Too Early Fo Sun

I guess its my nature to "rush" things a bit.  So when my skin seems a bit calm for a couple days I dive off the deep end and bake in the sun only to be in flare central the next day!  One major issue for me, having darker skin is that my red isn't very noticeable.  I mean I can see it, but now that I have linchefication, and am tanned, well the red is kinda drowned out by all the melanin!  This has happened about 5 times, I go riskin git in the sun (which feel sso good), only to be covered in hives by that night.  Arrgghhh!  Plus its's summer, avoiding the sun is next to impossible.  Plus I have children to take care of, so keeping everyone home bound for the summer really isn't and option.

I really think that even if your skin may "seem" ready, it isn't.  4 months in really is too soon, I think I will bake next summer.  The rest of the summer I am covering up and keeping cool!  Sun hats for me! :)

Hope everyones TSW Journey is going well!  If you happened to stumble on this page, watch the video below for more info.  Also the ITSAN site is a great resource for those dealign with ongoing eczema

Tuesday, May 28, 2013

4 months in skin pics...


Since cessation of TS my hands have done nothing but improve.  No ooze, no bleeding, continue to shed dead skin, the fingers used to be much darker.  My hands continue to give me hope the rest of my body can heal


As you can see my wrist looks a bit better from my last photo update

Monday, May 27, 2013

A couple days after hell...

Well last week as rough, as was the week before.  I am not really sure if things are improving or if I am just getting used to it?  Ha!  I am still very, very dry.  I bought organic shea butter, seems to be the only thing that doesn't burn my ski.  But I don't find it absorbs deeply enough into my skin.  I guess because its so dry right now.  Aaah well!  At least I found something that doesn't burn.  I also bought a concealer to even out my face, so although I look lik I got a sever sun burn, at least its an even sever sun burn! LOL




Friday, May 24, 2013

PICS

I find the photos always look about 20% better than it really is, thanks fo flash I guess! Anyhow coming out of a flare-the one thing that continues to give me hope for healing is my hands!






The calm after a flare

Well my 'junk food flare' is finally over. This is the longest flare I have had since the beginning and the worst I have eaten during an entire flare.  Hard to know if its the food.  Although many will tell you it isn't, many will tell you it is.

I am a pretty straightforward kinda gal.  Lay the facts down and I can make an fair assessment.  What's so frustrating is the varring opinions in reference to food consumption playing a part.  And then there is the leaky gut propaganda, along with candidas and who knows what else. 

I have mixed emotions about whether diet is linked to eczema. There have been times I have eaten perfectly and still flared and the like with junk food and not flaring.  So I don't know!

Anyone have any thoughts?

Tuesday, May 21, 2013

Still Flaring-Healing is Long Time thing

a very dry neck
Hey all,
I hope you are making it through your TSW experience.

I am about 4 months in.  The beginning seemed much more promising.  In the sence that my skin flared and then calmed down.  Now for the last 2 weeks it's just been  one long flare.  I have never had a flare this long since the start.  It also seems as if some paces are getting much worse.  Like my face,neck & arms cracky weepy central!

I am wondering if the heat is contributing to the hives and added rash?  Yesterday morning I took a 2 hour apple cider bath.  So much dead skin came off, it was incredible.   But my skin is pretty dry again today.  Moisturizer burn way too much during a flare, so I am going without.

It's not quite the most appealing look but I am learning to "own" my TSW skin/appearance.  Often I am trying to hide the break outs, but the hotter it gets, it's just physically impossible to do that.  I am thankful to have a great hubby and good friends/church that still love me despite my scaly, flakey, burnt appearance.

the forever oozing arm :(
I really do think it's important to have people around you that fully know and understand what you are going through. I even share how it makes me feel to those around me, not to draw a pity party, but to cause awareness.  They just may know someone with eczema and a red flag will go off and they may warn someone else not to use steroids.

Also letting others know whats going on and see it, as apposed to hiding, kind of frees you.   It free's you to hang out with your friends without them looking at your neck for a half hour wondering what the heck that is?  Because they already know and understand.  It also free's other to love you just for you.  When we try to hide and internalize the experience we are in for a long, lonely ride.  And without this, the ride is already long and lonely, don't add to it.

Speaking of long, when I first learned about TSW, I was under the impression it could take 1 year to get healed.  Maybe 18 months for a severe case.  I even came across people healed in 5-7 months.   So although that still seemed like a fairly long time, I could handle it.  The more and more I become familiar with the people in the ITSAN forum and blogs I have seen that this healing isn't just wrapped up in 18 months.  Although it can be and that's my hope.  But 2-5 years can and has been a reality to some folks.

elephant skin wrist...hehe-this is starting to be funny
This definitely was discouraging.  I even considered just going back to steroids. But then I thought about a few things:

1) To give up now would mean I suffered these 4 months for nothing
2) Steroids are a temporary fix to a long term problem, I will encounter TSW again later in life, and will have much more steroids to get out of my system...not going to be pretty during withdrawal
3) TSW is the only path to complete healing, yet steroids will never offer me any kind of healing.

I hope these 3 points will encourage you in your dark hours.  I am going through a rough time now, but it's only temporary.  It may be a long term temporary, but eczema with usage of steroids is permanent!  No thanks, I'll take the Freddy Krueger show for awhile!




My hands do continue to slowly heal

Rashy arm

Ugghh my back and neck, my upper neck and back is the worst

A closer look-it feels terrible

Saturday, May 18, 2013

PUFFY EYES :(

Well what a treat to wake up to this morning! Puffy EYES!  And on a day I am meant to go out with hubby for our anniversary! DEPRESSING! LOL Keep scrolling to see how I solved the issue


SUNGLASSES SAVE THE DAY!
LOL Is my hubby mocking me with his eye partly shut? LOL
Hehe, no it was just the sun! We ended up having a lovely day, I once again didn't let TSW keep me down, but on the inside guys, I am kinda sad! :(



Friday, May 17, 2013

The flare that won't quit!

Last time I ever try an experiment with my skin!  I ate junk for about a week or so.  'Thought' it was making little to no difference, 'thought' I was coming out of a flare until boom, it got worse.

I am so angry at my self!  If something isn't broken why try and fix it! Ugghh! I have a terrible flare that has lasted well over its average time.  I have a wedding tonight and look hiddeous!  I am soooooooo angry!

TSW is driving me crazy!  Especially when I flare i just feel so down, and mentally exhasted.  I also am so tired of people saying "oh it doesn't look so bad" or "it blends in to your skin", or "no one even notices".  Or ther worst "its all in your head?"  Are you serious in my head?  I can look at my skin and tell you its not in my head!  I am so tired of this and I am only 4 months in.  My experience has not been all bad, but this prolonged flare is such a tick off!  I feel like i regressed right back to the beginning!  It doens't burn as bad, but I am just as raw, itchy and uncomfortable! :(

It is really hard in a flare to be positive.  I always say my next flare I will be, but today I just can't!  This skin condition stinks! :(

Monday, May 13, 2013

JUNK FOOD FLARE

Ok, so I am sick and tired of beig paranoid of what eat.  Every time I have a flare my mind things "oh maybe it was this or that?".  And although I know that diet is not a factor in RSS, I decided to conduct a little experiment to rest my mind easy.

Here's my experiment: For the last week I haven't been eating that great! I had a flare, and usually would go back to a super good diet until my skin clears.  This time I am going to let the flare ride out while I eat the same type of food.  JUNK!  I don't mean Mc Donalds, but glutens, some processed sugars, basically I am ditching the vegan, dairy-free way of eating to see if my skin will come out of a flare at the same rate.   I am doing this to rest my mind easy that food isn't what's setting my skin off!

So here I am mid-flare, skin is dying down at the same rate it always does.  So far it doesn't seem like diet it playing a part in lengthening my flare.  I do miss eating more healthy, I feel WAY more tired these last couple days.  Look forward to the little experiment being over :)

Sunday, May 12, 2013

Flare Pattern?

So I had a couple good days, I had to know the ugly flare demon was lurking round the corner.  Also yesterday I ate pretty bad.  Although I know diet it unrelated, but so easy to blame.  And my pretty band consisted of 5 gummy candies and fish tacos-not really that bad!  After having a pretty decent week, my skin last night began to feel off.  Sort of knew it was coming because of the eye eczema yesterday morning!  Then I noticed throughout the day my smooth skin was getting a bit on the scaly bumpy side.  Probably not that noticeable to the average eye, but definitely obvious to my "microscopic" eyes!  By the time I woke up this morning my neck had erupted over night and my upper lip too.  Visibly it's not too bad but I can feel that special flare "fire".  Rrrgggghhh! It's sunday for crying out loud!  But anyhow like last week I ain't letting this keep me down.

I did want to sort of share my flare pattern with you guys.  I am also interested to see if anyone else has noticed a  patter in their flares? Alright here we go

Week 1-4- Initial Flare: Basically that flare got increasingly worse.  Started in hands, spread to face neck, chest, back and legs.  Very red, very miserable, very noticeable!

Week 5-Flare #2-Things had began to settle down in terms of the "burn", but was short lives and came back for about3 days

Week 6- to present-Reoccurring Flare:  Since 6 weeks in, once a week, usually on a thursday-but this week came a bit late I get a mini or two day flare.  It's without fail.  My skin seems to revert.  But never as bad as the initial  and sometimes it's not quite visibly noticeable, but that feeling is there.  The uncontrollable itching, which usually follows with uncontrollable scratching, which leads to inevitable uncontrollable burning.  I find it quite interesting it hits me once a week?

At the end of each flare I do notice notable changes in my skin.  I love coming out of a flare, my skin feels very dry and leathery.  Moisturizer doesn't sting.  And within a da or two I am back to more stable skin.  As my flares hit less hard and for less time, I am certain I am well on my way to healing!

Have any of you noticed a flare pattern?  Do share...

Saturday, May 11, 2013

Finding Joy through TSW

So it's saturday.  Such a turn around from last week skin wise! I was mid flare last saturday!  Endured a seriously hellish night, and things calmed down sunday and have been better since.  Although today I woke up with some slight eye eczema, but my face is soooooo soft.  I think my bed sheets give me irritations!  Anyhow my skin has been relatively stable.  My arms continue to be my main problem and my neck on and off.  I find it strange that my arms are such a problem and I didn't even use a lot of steroid there.  The places that I used steroids the most(hands) are healing the most.  Strange!

Anyhow one of the hardest things through TSW is to be happy.  I find one day I am up the other I am down.  Lately I have felt a bit bi-polar even.  But last week I had a really rough time.  Saturday night I was just a mess. Burning, oozing, crying, miserable.  I thought to myself, I really can't keep living like this?  I felt so alone and desperate.  Being a christian of course I prayed and cried out to God.  I just felt like I had come to a dead end.  The next morning I would have church.  Sunday is my favourite day of the week.  I love going to church, I love playing piano and seeing my church family.  But with the way my skin was going it seemed like that wasn't going to be possible.  The one thing I loved dearly I wasn't "up" to doing.  It was about 4 in the morning, all was quiet, everyone was off soundly asleep.  I started to be depressed at the thought of staying home another day and out of no where I said NO!  Rather abruptly in my mind and then out loud. (TSW will cause you to talk to yourself)  I said NO to the suffering.  I said NO to TSW taking one more day from my life.  I determined no matter what I looked like, no matter how I felt I was going to force myself to do what I like to do.  Immediately I fell asleep.  I jumped out of bed that morning, not really feeling better, but not worse either.  I struggled in the shower as the water burned my skin.  I put on my clothes and got my hair all "did".  I didn't feel like going anywhere, but something in me knew I had to push through.


I got to church, and sat at my beloved piano bench.  I wanted to cry. A joy and peace just flooded over me.  I began to pray for my skin and was able to play for church service.  My skin actually didn't bother me all day.  I had a joy, that wasn't from circumstances.  It was inner joy.  I really believe anyone going through TSW needs to cultivate that in their life.  You need to fill your life with things you enjoy doing, and gain dominion over your mind and body.  Although  there will be down days and times you really can't do much, don't get sucked into this negative mentality.  I know I was starting to get like that.  The body heals much better when we are happy!  So continue to do things that make you happy!

(to the left)Here I am a week later, my eye eczema was acting up this morning, my arms are still pretty bumpy, but hey life could be worse!  In this photo I feel like its hard to even tell I suffer from eczema, I believe its because of the joy radiating from my face!  :)  What brings you joy?


Friday, May 10, 2013

Patience is Virtue in Life

Well today was for the most part good.  Until I attempted some Mothers Day baking. I guess the dough caused my wrists to flare. I can feel it calming down now that I washed it off and left it for a bit

Made me realize that steroid use comes from impatience a lot of the time.  Instead of waiting out a little rash here or there, we are inclined to get the first magic potion to make it vanish! Without little to know insight on the effects of the cream.

This entire TSW situation had taught me not to just listen to a doctor or take any medications without further looking in to it.
How many of us could have avoided TSW with a little patience with our rashes!

Ah well. Anything worth learning never comes easy!  Please pass this knowledge unto those who are uniformed.  I wouldn't wish TSW on my worst enemy!

Happy healing everyone! :)

Thursday, May 9, 2013

Month Four Begins!

The Bumpy Scratchy Arm
I am entering my fourth month of TSW.  So far so good.  I have had my hellish days/ weeks.  But currently things aren't too bad. This past weekend was awful but my skin calmed down after that.  I am noticing my arms are very bumpy and rashy while my hands face and neck are healing.  Strange everything doesn't just heal all at once.
One thing I didn't really consider prior to stopping steroids was the effect it would have on my family.  On my rough days I can't take care of my kids the way I normally would.  The insomnia makes me super exhausted and cranky some days.  Its hard on my hubby too because I just don't  "feel" good about myself.  So how I even relate to him has been different. As I heal things are slowly getting better, the topics of convo aren't always about what I read on Itsan or my withdrawal symptoms for that day. 
There have been times the withdrawal has been so bad that I considered taking steroids again because I felt guilty putting my family through this?  Anyone else go through that thought? 
I felt a bit selfish at times subjecting them to this.  I always find mid flare these thoughts run through my mind.  When I am out of a flare I am pro- TSW!  I hope I can get to the point mid flare I have a good attitude!  I guess as the flares become less and less severe I will! 
Anyhow so happy to be four months in, I cried when I first learned how long TSW could last.  But now I am sort of getting used to the yo-yo progress of my skin.  I have adjusted to the bumps and scratch. Really I have learned to become content in my own skin!  Never thought I would see the day!
I hope you are all well...atleast we are healing...no matter how bad it gets :)
Have a happy Thursday!

Wednesday, May 8, 2013

Face beginning to Heal

About 1.5 months ago my eye eczema was nasty.  My face was covered in raised dry puffy skin.  I personally felt like I looked like Freddy Cruger.  I was sooooo self conscious about my appearance.   I really was forced to learn beauty is more than skin deep during that period. And even now that my skin isn't completely normal on my neck and arms. I am not so self conscious. I just wear my skin, because its what God gave me. And whether its filled with rash and red or smooth as a babies butt its still beautiful!  So be encouraged to show your skin this summer! :) Don't let RSS keep you indoors :)
Neck & Eyelide & Under nose still a bit dark and rashy
I can't believe I was able to where this shirt all this was red before-but now very dark :(

Tuesday, May 7, 2013

Skin Update-healing slowly but surely!

back of leg-scaly and dry-rash gone! :)
Sadly when I was first going through TSW i didn't even know that this was what it was.  I didn't take any photo's-and truthfully wouldn't have wanted to.  I commend those that do. My skin has improved a lot but still has a ways to go so now I am taking photos to mark the success!  I honestly look at these photo's and want to cry because this is the first time in my life that I have not used steroids to treat eczema and seen improvement.  I never thought my hands especially could look like this.  Even with steroids they never looked like this or ever stopped itching.

Inside of arm-skin is quite scaly but rednes is down to nothing :)

I should have taken before pictures but almost all  of those wrinkles were open and oozing.  Plus the skin was super super dark! It has shed and evened out so much!
Two months ago this was all cracked an oozing, now my skin needs to smooth out and look less "reptilish."  There is one small blister left on the top right side

Its hard to get good photo's, but my neck is very dry  but not oozing

very dry neck, weeping is gone 

this was all red before-now i have scaring from scratching it i assume

My arms are still quite bumpy and dry but ZERO RED! :)

My hand is almost looking normal!  I think its just a good shot hehe!



Eczema Cure Remedies! Forget them!

Warning: This is a rather lengthy read, so I encourage you go grab a snack and cup of java, sit and enjoy! LOL

So back in February when I was officially done with Steroids I went in search of a "cure" for my eczema.

I woke up about a week or two into my TSW and my hands had really gotten bad.  I mean they were split at every joint, skin practically hanging off, oozing yellow crust non stop.  It was a nightmare! And since they were so tender, I couldn't scratch them.  I was miserable.

So the first thing I looked into was a homeopathic doctor. (side note: if you have tride homeopathy/nature path/acupuncture and it worked for you, I am happy for you, these things just weren't effective for myself).  Anyhow so I called a homeopath.  She answered my call on a saturday!  I was impressed.  I told her my situation and she said I could come in on teusday to see her. In the mean time she suggest soaking my hands in salt water to dry out the ooze.  I was ecstatic that now I have a doctor that will spend hours with me, and really "get to know me".  Now while that's all fine and dandy, it would come at a small cost of $200 a session. But hey that includes my medicine, so that's a deal right? Wrong!  So that weekend, since I was so stoked about the new doc, I did some "homeopathic" research.  On all the doc sites there were wonderful testimonies, but off the sites I couldn't find any.  Then I found an article.  This guy decided to try out the homeopaths to cure his eczema.  He had a week by week update.  In hindsight now I can see he was just going through TSW,but his consenses was homeopathy doesn't work.

I looked a little further into the meds.  Think of a swimming pool filled with water and I drop one splash of red dye inside.  Then I take a glass of that water and tell you this water will dye your clothes red.  You would look at me and think I was nuts? Well that's their theory, all of their meds are heavily diluted-basically placebos!  I am so thankful I did my research prior to spending the money. It also dawned on me, if she had a cure for my eczema and gave it to me right away, she would be out of a patient (money).  So why wouldn't she just egg me on further.  I now realize if someone was healed with homepoathy, it's a cover, they are taking credit for TSW. And if you stick with it long enough yes you will be healed, but you will think it was that cup of pool water with a touch of red dye, and not realize your body just healed itself naturally.  What a shame!  So I escaped that and moved on to my next cure...

DIET-last year I had started a "sugar free" diet.  Read blog for more details.  I noted my skin got better during that time.  So somewhere in my mind I thought that was why my skin was better.  I didn't take into account that I have had many stretched where my skin is better and I probably touched up my skin with some steroids every now and again sub-consciously to keep symptoms at bay.  But no no, when you are in search for a cure, you will believe anything.

So I decided I would cut out sugar.  And while I was at it, I added, gluten, dairy and meat! Ha!
What the heck was I going to eat?  I am a bit embarrassed to say I still eat like this, but for completely different reasons now.  And I am a bit luke warm with it.  I had a burger today-first one in months.  But I quite enjoy this vegan style of eating and "feel" much better.  But my skin...in the beginning there was really no change. I thought well it could be a "healing crisis", after about a month, with a couple slip ups in between I realized this had nothing to do with my diet.  The real breaking point was a month back.  I had eaten like a champ all week, no cheating.  So I indulged in a white chocolate brownie (mmh-mouth watering now) and a pesto cheese sandwich  with tomato bisque soup(I had been avoiding tomatoes, because they are night shades-what the heck is a night shade?)  Anyhow, I thought for sure in the morning I would pay, I woke up and my skin was better.  So that day I had some more junk. I just wanted to prove that diet was causing the flares.  Well the same thing happened.  Skin had improved!  Since I didn't want to risk it any further, I proceeded to my healthy vegan diet.  A week or two later-BAAAMM hellish flare.

So diet was ruled out.  What about supplements and topical stuff?  I took a trip to my local health food store. $175 later (lol could have visited that doctor) I had my cures in hand!


This is what I bought
1) Skin Disorder Pills-testimonies of eczema gone within days-ooooh sounds promising? NOT! Was some sort of blood cleanser! Waste of money-at least I am entitled to a refund :)

2)Spirulina-Jury is still out on this one.  Basically I still take it, it has to do with digestion-and if you read up on eczema a root cause it the famous "leaky gut".  Well I am way more regular now-soI guess it did its' job-but I still go through regular flares and quiet peroids.

3) Zinc-apparently excellent for skin.  Don't laugh, I still take it-just because I paid for it. ButI had missed days and no difference.  I look forward to when these things are finished to see if their is remotely any change, but I doubt it.

4)Slippery Elm-another digestion aid-stopped taking because the spirulina seemed to do the trick, and I  mean how many pills can one take in a day?

5) Omega Pills- There was a time I took fish oil (gross tasting) I noticed huge difference in my skin, these capsules have done jack for me.  I may resume to the fish oil-but really i hate the taste! -__-

6) Dead sea salts- There was a couple weeks I lived in the bath with this, then I began to run out so I cut down.  It dried out my ooze, once their was no more ooze their was little change from it.  And mid-flare-it caused serious discomfort.  When I stopped using it my skin continued to get better.

7) Drinking olive oil daily-Ha, this one did nothing but make me feel gross, naseated and oily inside! LOL

8) La Mer Cream-this sweet cream is about $300 for a 3 oz jar.  LOL I walked into Holt Renfew after reading some promising things about it.  Applied to my skin-my hand immediatly flared before the consultants eyes! LOL right after she told me how soothing and awesome it is.  Next day rash went down a bit, but there is no way I am going back for any samples of it.  I wasn't even flaring when I used it, and I tried it on the most durable part of my hand.  Not to mention the ridiculous cost for less than a half jar of vaseline!  Don't bother with the stuff!

I am truly thankful to have come across the ITSAN site, because eventually I would have not been able to cope tieh the "healing crisis".  Especially with the patter of TSW getting better than worse and better again.  That doesn't quite line up with natural healing methods.  An initial healing crisis is understood, but how could they explain a flare 6-9 months later?  In short-well actually in length haha, its all a gimic!

I think one vital thing to remember in trying to cure your "eczema" is that, it's not eczema!  So while some of these things may work for a genuine case of eczema they aren't for Topical Steroil withdrawal & Red skin Syndrome!

I feel really sad when I read about people spending all this money and time on these holistic/natural remedies.  And they actually believe that's what cured them! Ahh no!  You just successfully made with through TSW-with an added cost!  Don't get fooled friends! There is not quick fix to TSW.  From what I have read everybody has their own experience  and most would agree that the above factors did nothing for helping their situation


Monday, May 6, 2013

Dealing with your Doctor

 I am a newbie to this, just 3 months in, so I don't assume to know everything about TSW, but i just wanted to use this blog to share what works for me!  Please do let me know your feed back and methods you have tried! :) On the Itsan Forum, a question went out regarding finding a good doctor.  I just wanted to  dedicate a post on dealing with your doctor/derm and the approach I used to get support from my doctor!

Firstly, you need to know your stuff!  Not because you are going to enter a debate with  them (that would be unwise-seeing as eventually you want them to prescribe you meds for itch and pain).
The reason you need to know your stuff is because they will shove steroids down your throat(not literally)  you want to know enough not to fall for the bait.  Especially mid-flare.  Once you know your stuff and are confident in TSW, you are ready to see a doctor.

These are my tips regarding "Doc's & Derms"

1)You do not need to "prove" TSW to your doctor.  It is extremely difficult for a doc to admit to you that they have been screwing up for all these years.  So try another approach.

2) Use their knowledge against them: What info can you find regarding steroids that is medically supported i.e-on the Topical Steroids websites and otherwise places they would support.
So things like, thinning of the skin, limited sun exposure, glaucoma, cancer , stretch marks and a suppressed immunize system are all medically recognized side effects of steroids that your doctor will agree with.

3) Simply say, I no longer want to use steroids anymore because  of the above side affects.  Tell them you have noticed your skin thinning, you want to be out in the sun, got stretch marks, whatever-even though it's not your main reason, that's all Dear Doc needs to know.

4) Let them know it hasn't been working and the pattern.  Without impling that there is a whole 'syndrome', just lay out the facts for them.  I did this with my doctor.  I let her know I have been using these my entire life, everyday at some point and each year we up the anti with the steroids.  You would prefer not to end up on predisone one day-also list side affects for that or an injection.  So for that you would rather suffer through your eczema.  Which is really TSW(but they don't need to know that quite yet)

5) Of corse protopic-and elide will be offered.  Say honestly I don't want another immune suppressant and if they could just support you through the symptoms instead.  Give you something to help itch, to sleep better and to watch out for infections.

6) How you treat your eczema is your choice not your doctors.  When I told my doctor I didn't want to use steroids anymore she did understand. But as I said I didn't introduce the "red skin syndrome ".  Basically I saved her ego, and just asked her to level with me.  Her and I both knew the treatments weren't working, so why not try something else for a bit.

7) As your skin improves-make sure to go in an see your doctor! This is key, because if you really want to convert your doc, they are going to have to see it for themselves.  So go in during your flares and ask for whatever you need.  Reiterate you know that steroids would "solve"(stroke ego) the problem but would prefer not.  As soon as the symptoms subside book another "victory" appointment!

8) Once you are healed make sure to see your doctor and then show them the the study and all the facts!  I truly believe this is the best way to get support from a doctor and in the end probably may even help them change their practices.


No one likes to be told they are wrong or aren't doing their job properly.  Especially those with doctorate degrees tend to have medical pride!  And rightfully so, they spent how many years in school studying things we can't even pronounce?  How can we really expect to walk in to their office with a couple sheets of paper and expect them to lay down what they have spent their whole careers believing.
I am sure their are some doctors that would read the pages and believe immediately.  But as the saying goes "seeing is believing" !


Coming out of a Flare

Alright so I am about 3 months in to my TSW(topical steroid withdrawal).
And to be frank, its hasn't been all bad, but the flares are a BEAST!  It is absolutely amazing, how the skin can be calm and peaceful one day and absolutely HAY-WIRE the next.  My latest flare started thursday evening.  I had attempted some "sun".(not sure if that triggered it). I began to feel very tingly and stiff.  Then I decided to try "not using moisturizer" for a day!  Please don't try this at the start of a flare.  Friday & Saturday were absolute hell for me!  At 4 am Saturday night I told my hubby that if this is what hell feels like, you certainly don't want to go there! LOL

My entire body was burning in a wa I had never experienced.  I wanted to yell and scream but couldn't because  I didn't want to wake my kids up.  One of the worse experiences of a flare for me apart from the burning is insomnia.  I envied my husbands sweet sleep.  And there is a reason people sleep at those hours.  I found myself having the strangest most depressing thoughts on my sleepless nights.

I finally went down staires and paced my living room as I "prayed".  Was more of a complaining session really.  Then I caught myself and thought well I could be sick with a life threatening desease.  And then I lost myself and thought, "well I would rather that, at least I knew I would be dying soon!".

I had no clue what TSW could bring you too.  I was angry and bitter with doctors and my parents for letting me use this poison for all these years.  I never once was told not to use it for more than two weeks.  My doctor would say when the symptoms are gone, stop using it.  The problem was the symptoms rarely were gone, so I needed continued use! Baahh!

Anyhow I mustered up the strength to go to church sunday  morning!  Really didn't want to.  But I am so glad I did.  I told myself this desease will not have dominion over me.  That attitude got me through the day.  But also I was coming out of my flare.  What a peaceful feeling to come out of a flare.  Each time I come out I have faith I one day will be healed!

Today I spent outdoors watching a ruby game.  I was in the sun for 3 hours.  Yikes....I hope that won't bring on another flare! -__-

How is everyone else's TSW going?  Would love to hear

Saturday, May 4, 2013

A Steroid Free Life

Hello All!

I can't believe I am embarking on another "blog adventure". But this one is especially close to my heart.
So for my followers from previous blogs, here is why I am starting this one.  And to my new readers, well you already understand.

I have had Eczema all my life. As a child my parents slathered topical steroids all over my skin to calm down the unsightly rash.  And usually it would do the trick.  That is until I ran out of the creams, or some other factor caused me to "flare" again.  Growing up, I always had "skin" limitations.  My skin was hyper sensitive, so really anything could cause me to break out.  As long as I had my trusty creams though, all would be ok.

Up until a month ago I didn't even know the risks of steroids.  The derms & docs just kept prescribing them to me by the jar full, and I as a faithful patient continued to "poison" my body.  Unaware of the monster that was being created in my body.

Most people that knew me, up until recently even, never really noticed my eczema.  I had it pretty bad on my hands but kept it well contained on my body.  My skin even looked "normal".  But as the years passed I got a bit fed up with the fact my hands would never get better.  In fact they were getting worse.

I was using the strongest cream I could and was thinking there must be something stronger I can use.  My doctor (God bless her) refused to give me oral steroids and looked at my hands and persribed me some low dose Topical steroid.

Now when you have had eczema for over 20 years, you know which steroids are going to work and which aren't.  I was infuriated that she thought she could just give me some low dose prescription when even the strong ones weren't working and she knew that.

I left her office (February 2013) in search of a cure for my eczema. I was tired of having to go to the doctor once month to get a refill.  I was tired of the panic that would strike when my skin would begin to tingle and flare.  And over all I was just feb up with having eczema.

So my journey to an eczema cure began.  I decided to look into homeopathy, natural methods and crazy diets and eating habits.  All which seemed like they were the answer but really were not.  On another post I will go into detail of the foolishness I got myself into, and the ideas I believed.

Anyhow about a month and a half into my Topical steroid withdrawal-which i didn't even know I was having.  I just figured it was going through a "healing crisis", I came across the ITSAN website.  I couldn't believe what I was reading. The steroids were my problem.  Not hidden allergies.  I couldn't believe the path to my healing was so simple.  Stop the steroids...get healed!

The problem though was when I read through the testimonies of people who had gone through topical steroid withdrawal ( the process of your body getting rid of the drugs from your system).  It seems so discouraging to me that it would take a year or perhaps longer to get healed.  At that point I almost went back to the steroids.

But the strangest thing happened.  My skin was beginning to get better, especially my hands.  The rest of my body was going somewhat hay wire-but my hands hadn't looked this good in...well I don't even know.  That small little healing that was taking place in my hands gave me hope the rest of my body could heal too.  And thats when I decided I am 100% done with steroid creams.   I have seen the effects they have had on me and others and they certainly aren't pleasant.

My entire body had become covered in red bumpy oozy  and blistered.  My face and neck have gotten way darker.  At times I can barely move, and have never quit felt so ugly, but when I look at my hands that were a hot mess months ago, it gives me hope!  There is a cure to eczema!

Anyhow, I love to write, have 4 other blogs, have seen many other blogs documenting the process of Red Skin Syndrome and Topical Steroid with drawl, and thought-hey why not?  Maybe it will help someone, maybe it will help me get through this!!

Look forward to the upcoming months!

Hands much better-were all split and oozing a couple months ago
3 month flare-just yesterday-ugghh here we go again

my entire back is all covered-weepy oozy skin.  Bumps galore-not very pleasant, but hey its the process of healing