18 Months

For the past week or so, my inner arms have been itchy and a bit pink. My neck and forehead have also been itchy. Those are the only spots with itch so my fingers are crossed it will stop here. The itch is not really that bad (compared to a few months ago!) but it's annoying. I've been trying my best to not scratch since that obviously will make the skin redder and damages the skin. I've been really stressed out the past couple weeks so I think that's contributing to it...maybe I'll always have some atopic tendencies...maybe it's the weather...maybe it's just a little fizzle of TSW...who knows?

Words of Wisdom

To all of those going through TSW, this is a good thing to keep in mind:

17 Months

My skin is still good and so am I! The only thing I have noticed in the past week is that my lymph nodes in my neck are a little swollen -- not as badly as during the earlier months of TSW, but more than normal. I know I have been very stressed, not going to bed as early as I should, and not eating as well as I'd like. Hopefully it's related to those issues and not a sign of an upcoming flare. Fingers crossed!

A Thousand Words

You can click for the full-size image.

454 Days Off Topical Steroids

Oh, hey!

What's up?

Haven't been in here a while.

I guess that's a good thing. :)

So since the last time I wrote anything, my little bits of rashiness have slowly faded away. Now I just get a teensy tiny barely bit of a flare around That Time of the Month and that's it. Barely anything and is less and less each month so I'm sure eventually it will be nothing.

I have gotten back to working out, which makes me really happy. About two months before I started TSW, I had started going to a bootcamp-type gym and, well, obviously that ended once I started TSW. As most people who go through TSW know, the last thing you feel like doing is a work-out! So although I did not gain any weight during TSW (yay! although seriously the LEAST of my concerns during TSW), I still have my pre-TSW weight to work on. I am signed up for a 5k at the end of this month and I've been using the Get Running app. I ran! And got sweaty! (Which, as most TSWers know, is a miracle in itself!) My skin does get really really red during my runs but to be honest, I am very pale and very out of shape, so I think it probably has more to do with that than corticosteroid damage. I am also working on eating healthier which I will be posting about at my other blog (link if you're interested).

My skin is a tiny little itty bitty bit drier on my arms than a normal person, but the rest of my skin is perfect. My arms are less dry than they were a couple months ago so I'm sure they will catch up. And honestly, it's barely anything. I'm probably the only one who notices and that's just because I'm so used to examining every detail of my skin!

A random little thing I've recently realized is that I don't have dandruff anymore. I actually forgot I had dandruff, since TSW turned my whole body into a flake-nado! But in retrospect, I don't think I ever had dandruff. It was just dry skin caused by all the TSA nonsense. I had a flaky scalp for as long as I can remember, no shampoo helped, not even the medicated stuff. Super embarrassing at the salon! Now it's gone. Oh and I used to get really bad scalp itch on the back of my head. Not anymore.

I do not use any moisturizer. I do not need any moisturizer, lotion, potions, creams. This is crazy to me. If you knew the number of moisturizers and lotions I've tried on my face since I was about 12 years old...! All with no success, no help to tame the dry desert that was my skin pre-TSW. The only products I use on my skin are some makeup (normal drug store brand, just concealer under my eyes, blush, and eye makeup) and EVOO to wash off the makeup. None of it stings or bothers me. My makeup doesn't flake off, either. And when I don't wear makeup, it's okay, too!

It's freeing to walk through a store, to see all the ads and commercials for skin products and now that I don't need any of them!

Oh and I wore a strapless dress in public. No big deal...

Look! Normal skin! You just have to go through hell and back to find it.

My normal pasty pale ghost white skin is back! Oh, and you may not know this about me, but I am TAN right now. I know. It doesn't look like it, but I am! I also wore a (different) sleeveless dress to a wedding two weeks ago and did not even realize or think about my skin until a couple days later when I did laundry. I wore a sleeveless dress in public without a sweater! And without any worries! And with NO ITCHING.

This time last year, my wardrobe was a bit different...

Despite the summer heat, I was freezing all the time all the time. I was wearing several shirts (1-2 tank tops, a short sleeved shirt, a long-sleeved shirt, and sometimes even a sweater or hoodie) AT THE SAME TIME, a scarf, a pair of heavy jeans, knee socks or tights, wraps or bandages around my arms, hair up so it wouldn't tickle my neck and make me itchy...oh, and about 6 lbs of moisturizer a day! Wearing all those clothes also helped me try to avoid scratching. (Try being the keyword since it was impossible to avoid it, but it definitely slowed it down!) And of course, long sleeves and jeans hid my awful skin from the world.

I have tons of pictures that I need to sort through and upload so hopefully I will get that done soon. I think I am mostly almost all the way healed. I'm not ready to call it yet, though. I am concerned about the autumn/winter, since cold weather makes even normal skin act up. I guess we'll have to wait and see. Until further notice, I am back to my normal life! (Or as normal as it gets, anyway. :) )

Things I Notice

I'm going on a little weekend getaway and I'm packing for my flight. I'm packing my little 3-1-1 liquid bag and I realized that...

There is nothing in it for eczema.

Or TSW.

A little thing of EVOO to wash my face with, contact solution, makeup, conditioner, hair product...

Pre-TSW I would have been struggling with all the lotions and potions I used to keep my skin from being too dry...I also would have packed a tube of topical steroids...I would not have packed sundresses and shorts, either!

During the really bad part of TSW, I would have been on Google trying to find out if Vaseline counts as a liquid and if I bring a homemade cream in a unmarked jar, would that look suspicious to airport security? And frankly, I probably would be a wreck right now and ready to cancel my trip, too scared of getting crazy itchy on the plane, not having my usual creature comforts (like a bathtub, an ice pack, a bucket of palm oil) to get me through the itch, totally exhausted from not getting enough sleep. I would be packing one of my giant men's button down shirts that I often slept in.

But instead...

I'm just packing normal things -- well, I guess some people would not consider the EVOO or the Primal Pit Paste to be "normal" toiletries, but a giant family-size jar of Vaseline would definitely be less normal! I'm more worried about my carry-on being small enough than needing to manically claw up my skin on the plane, trying to squash the itch that cannot be caught.

I'm not totally healed, but my skin is okay enough and my life is pretty normal. Seemed impossible six months ago.

1 Year, 2 Months: Almost There!

I haven't posted anything in a long time, because really there's not too much to say! Which is good. My skin is generally okay - still have a little bit of rashiness on my wrists, inside arm, and behind the knees, but nothing bad. I'm actually wearing short sleeves sometimes! My arms are a little drier than they should be but it's more of an ashy texture than the really tight, cracked, flaking skin of earlier.

I am not using any moisturizer. Although my arms are drier than I'd like, I found that basically anything I'd put on them would just make them red and/or itchy. Since I don't have any issues with the skin being too tight/painful from the dryness, I just gave up. My face is sometimes a little dry in places, but no big. Actually the texture is better than when I was on TS, so that's a big win! No redness whatsoever. I use EVOO to wash my face and that's about it.

As far as quality of life goes, TSW hasn't slowed me down in a very long time. Which is great! I am back to sweating like a mostly normal person. I started working out again and it hasn't sent me into flares -- I get really red during it but not itchy and it goes away once I cool down. I am wearing makeup again without any issues. I am making sure to get some sun, too! I was able to cut my hair shorter now that my neck won't be bothered by it. During the really bad TSW my hair was almost always up because otherwise it tickled and made my neck itch like crazy.

Here are some comparison pictures of my face. I don't have too many because I hate taking selfies and I feel dumb asking someone to please take a picture of my itchy un-made-up face. But here are a couple I could find, all are without makeup or photoshop. In the pictures, you can't see the texture -- the first two, my skin was both very very very tight and very very very dry.

In the first one, I kind of look like I'd gotten too much sun but that was definitely NOT the case since I was hiding in the house as much as possible. I was RED, redder even than this picture shows. My smile was definitely forced -- what you can't see is that I was absolutely miserable that day. It was very hot but I was freezing -- which is a hard feeling to explain, like I KNEW the weather was warm, I felt that it was warm, but I couldn't stop shivering. My skin was burning and itching. I was at a family event and trust me, I would definitely have preferred to be in the bath. And I was red pretty much everywhere! I'm wearing a long sleeve button down and kept trying to pulling the sleeves down over my monster hands. I was VERY self-conscious - please don't look at me, please stop taking pictures, can I go home and hide now?

In the second one, my face was less red, less itchy, but still very tight and dry. Still a bit of a forced smile because my skin was so tight it hurt! I was out at a sports bar for the big game with a group of people. Some I didn't know so I was very self-conscious to meet new people. I went to the bathroom a bunch of times just to scratch and put lotion on to try and tame some of the facial flakiness. I have a bit of a crustache going on, my neck was so tight it was hard to move my head, and I was wearing four layers of clothes because I was so freezing cold!

In the last one, my skin is pretty much normal! Yay! I only thought about my skin for a few seconds, because my eyes looked tired and I wanted to put concealer on (but didn't have any). I didn't think of any TSW-related issues at all. I was meeting a friend's new baby. When I met another friend's new baby a couple weeks prior, I was self-conscious holding the baby because my hands were so red. But I actually didn't think anything of it this time around. I'm still wearing a cardigan, but at least I'm not wearing a million layers of clothes like other times!

So that's my current status. I think I'm like 85% healed...hard to put a number on it, but when I compare where I was to where I am, I'm doing great! I think the summer sun will help me kick the last of it and hopefully I'll be able to wear a fun party dress on my birthday in October without thinking of my skin at all!

Day 329: Red Hands!!

The past couple of days, my hands have been super lobster red. Just the top, not the palms, and they aren't any itchier than usual, but they're so bright! I don't like it! >:-(

Hate This Cortizone-10 Commercial!

I am so tired of seeing this commercial every time I watch TV. Cortizone-10 will NOT heal eczema! Cortizone-10 has hydrocortisone (also known as a topical steroid) in it and will only temporarily suppress the symptoms of eczema. And, as most people reading this already know, should NOT be used long-term! It will cause topical steroid addiction and worsening eczema.

Day 314: The Stagnant Phase

I updated my layout so check it out if you're seeing this through an RSS reader! :)

I haven't been posting very much because there isn't much to say, which is a good thing. I'm currently in a stagnate phase - my skin doesn't look perfect or completely normal but it's livable. On the ITSAN group, Kelly P described the stagnant phase like this:

Stagnation is definitely part of TSW. What I seemed to experience later on was that my eczema was "cured" but I was left with months of Steroid Damaged Skin (dry, flaky, saggy, pink itchy--but no eczema). I describe this as one's skin being free of addiction to steroids, but not free of the long term damage that the skin takes time to heal from.  Everyday though in SMALL steps your skin will continue to improve: returning moisture, smoothness, flexibility, proper color, itch free, tightening sags, etc. This is a long process from start to finish, but you will get healed all the way. Hang in there!

There have been improvements - the thing is, it happens so slowly that I don't notice it unless I sit down and think about it. I talked to Leslie from Pink Like a Beacon about my current skin condition and that allowed me to notice all the things that have gotten better.

I have two settings - "okay" and "flare." 

"Okay" right now is not 100% normal perfect skin, but it is okay. It's livable and doesn't distract me from my life. This is about 90% of the time so I'll talk about that first.

• Skin Color: During this time, my skin is not bright scary red like it has been in the past. The red skin is either gone (face, stomach, legs), very light pink (arms, neck, chest), or a deeper pink (wrist & top of hands). My palms are completely clear.

• Itch: The itch is so much better during my "okay" time. It's not constant and it's much easier to ignore most of the time. I don't have that uncontrollable need to scratch. Generally I don't notice or can ignore it. When I start to focus on my skin and think about it too much, though, I start noticing more little itches all over. Even then, it is not like the intense deep itch from earlier in TSW and I can either take my mind off those little itches or sooth it by just rubbing the skin a little without using nails. 

• Dryness: My skin is not as dry or tight. I don't need Vaseline to turn my neck anymore! I can open and close my hands without pain from tight skin. I am currently using Vaseline mixed with palm oil (1:1) or Neemaura Hand & Body Lotion that Joey found. I use one of these in the morning and before bed/after a shower. Sometimes if I get fidgety or anxious, I scratch my hands out of habit even if they weren't itchy in the first place. When this happens, I try to catch myself and use some lotion to distract myself. Other than this, I don't need to use anything - the skin isn't painfully tight anymore. The texture is still on the drier side in most places but it's not so bad. My palms are super soft and completely normal. The skin on my palms is actually softer than I can ever remember having!

• Flakiness: My skin is still on the drier side but nothing like before. It used to be visibly flaking - often in big flakes - but now I only have that issue on my wrists, tops of hands, and a little around my mouth and my hairline. The rest of my skin is either mostly normal texture (stomach and legs) or ashy/powdery. I started using a body brush in the morning before getting dressed. I don't know if it helps with the lymph like people claim, but it gets rid of all that powdery dead skin. I think it might also help with the itch a little because (1) it's a good, non-damaging way to scratch all over and (2) I think dead skin lingering on the skin makes me itchy. 

I would NOT recommend trying a body brush if your skin is raw in any way. That would hurt!

• Long Baths: No baths at all! I haven't taken a bath in at least a month. Even before that, baths had gotten sporadic and shorter since the start of 2013 (month 9ish). I shower, of course, but like a normal person! 

• Rawness/Ooze: I don't have any raw spots, tiny blisters, peeling skin, or oozing. I had some issues with the skin behind my ears and my earlobes up until Decemberish, but haven't had any issues since.

• Swelling: No swollen eyes since October. I think my swollen fingers are starting to shrink, too. I never had swelling in my legs/feet (that I noticed). My lymph nodes are going down/mostly gone. There was one in particular in my neck that I have been "monitoring" since October and now I can barely find it.

• Nerves: I haven't experienced nerve zaps very often in the past few months, just a couple times here and there. It's more annoying that anything else.

• Elephant Skin: The rolls of "elephant skin" are gone, just a little bit around my wrists. Since I scratch my wrists and hands the most, this makes sense. Also my skin isn't lichenified anymore.

• Sleep: My sleeping pattern is totally normal (or would be, if I didn't let myself stay up too late). I don't have up-all-night scratchfests during "okay" days.

"Flares" only last a day or two and they are significantly better than what I experienced earlier in TSW. These flares are more subtle and don't knock me on my butt like before. There's really only two things that happen: redness and itching.

• Skin Color: The skin becomes redder. The light pink & deeper pink areas become a brighter, angrier red. The skin that's normal colored becomes a light pink. 

• Itch: The itch increases. It goes from "can mostly ignore" to "really REALLY intense and needs scratched ASAP." Even though itching during a flare is much worse than my "okay" days, it's still much better than earlier in TSW. I can usually (though not always!) control the scratching and just rub or tickle the skin instead of tearing at it with my nails or something scratchy.

• Sleep: I haven't had many itchy nights during my flares. Last month, I just had 2 and so far only 1 this month. And even these are more manageable, since a quick shower is usually all I need to break the cycle.

So that's where I'm at right now! Not so bad, could be a little better, someday will be better! I am definitely ready for some sun - actually went to a tanning bed yesterday for a couple minutes. I know it's not as good as the sun, but seeing as how it's 35* and cloudy here, it's better than nothing! My skin was warm to the touch after and a teensy bit pink after tanning but a few hours later, it was back to its "okay" state.

If you are going through TSW, how's it going today? Have you seen any improvements or is it still early on for you?

I also wanted to mention this article from Dermatology Times, although you've probably seen it if you are in the ITSAN forum. It's a great article, though, and definitely a good resource if you're dealing with a skeptical doctor. Topical corticosteroid addiction may be to blame when 'rash' defies treatment by Paula Moyer.

Day 289: Look Ma, No Rash! (photos)

A few months back, I visited my GP for the first time since starting TSW. You can read about it here, but in a nutshell she said I either have really bad eczema and possibly ringworm on my abdomen. I still make the o_O face whenever I think about that because what I had looked nothing like ringworm. Ringworm has...you know...a ring.

Courtesy of WebMD

What I had did NOT look like that at all. The derm said it was eczema and even took a biopsy to "prove" it to me. It came back as spongiotic dermatitis which is typical for Red Skin Syndrome patients. It's just another word for eczema/atopic dermatitis. Another word for "you have a rash, I don't know why, but it's not contagious."

I was four months in when I saw these doctors and since then, I've watched the rash on my stomach/side slowly shrink and lighten up to an almost normal skin tone (which for me is ghostly white). The other day while getting dressed, I noticed it was barely visible! Before and current pictures after the jump...!

Day 274: What's Luck Got To Do Got To Do With It?

If my skin were a baby, it would be born now. Nine months seems significant and for some reason, seems like it should hold some kind of finality for this journey. All I have been doing is watching every cell of my skin reddened then flake off, again and again and again, for the past nine months...but it's not done yet. It's no longer the ONLY thing on my mind, but it's certainly the #1 thing on my mind and I am sure I have wasted countless hours thinking about it, reading about it, trying to do something about it, itching from it, and hurting from it.

If you are starting TSW, there is one thing I can say for sure: you will put a time frame on it no matter how many times you are told, "Don't put a time frame on it." You will think you will probably be one of the lucky six month healers. You will think that by doing X, Y, or Z, you will be able to speed it up. You will think that it could not possibly take that long because nothing takes that long nowadays. You will think that if a whole person can get created and built in nine months, your new skin couldn't possibly take that long.

You might not ever verbalize this, you might say you agree that it's impossible to know how long this will take and that you know you're in for the long haul...but deep deep deep down inside, in your heart of heart, secret of secret, you will hope to be lucky. 

I hoped to be lucky. I still hope to be lucky. And at the same time: I am lucky. After years and years of thinking I was just one of the unlucky broken ones, cursed for no rhyme or reason with horrible incurable eczema, I found out that I'm not broken. A little poisoned and worse for the wear, maybe, but nothing that some time (a lot of time) won't (eventually) heal. I'm lucky because my health and skin problems stemmed from something that can be changed. I can be fixed. This is not life long. This is not incurable. This is not permanently scaring. This is not fatal.

This isn't to trivialize the hell we go through, all the miserable hours spent itching and crying. There is something to be said for the anger and desperation and mental exhaustion and emotional breakdowns that we go through again and again while healing from topical steroid damage. When you're at your lowest of lows, it's hard to hang onto the prize at the end of this race. When you think you've hit rock bottom only to fall another hundred feet, it's awfully hard to imagine that you're lucky. You don't feel very lucky. You feel miserable and you wonder if it's ever going to end. Guess what? It will. It will end and that's what makes you lucky.

I'm lucky.

There's a reason why people tell you to not put a time frame on it. It takes as long as it takes. It's done when it's done. And there's not much you can do about that. I thought I would be done at six months, too. I thought I would be lucky and yet...here I am. This is not meant to discourage anyone - it gets better the longer you are off topical steroids. Month 6 is better than month 3 and month 9 is better than month 6.

You'll have a better handle on what makes you feel better, you'll have (mostly) accepted that whatever happens will happen, and you'll have (mostly) stopped fighting the process. You'll probably have seen visible progress so you know that even if you flare again or even if you flare regularly, you know the process -- flare then calmer, again and again. But even though it's better, it's not done. Pink is better than red but pink is not the color I'm supposed to be. Dry is better than itchy but dry is not the way my skin is supposed to be. Waking up once or twice a night to scratch is better than being unable to sleep at all but sleeping with no problem is the way it should be. Itchy sometimes is better than itchy all the time but... Better is not done. Healing is not healed.

And so you hope to be lucky. Everyone hopes to be lucky. But you are lucky. You know what the problem is, how to fix it, that it can be fixed.

Whenever I wander onto an eczema website or forum or blog, I am struck by the despair I feel from every one of those posts. I know that probably sounds over dramatic to people without skin issues - after all, it's just skin. It's just cosmetic. To those people, I would say spend twenty minutes reading anything by a chronic eczema patient. It's not cosmetic. It's not superficial. There's pain and itch and cracked skin and rashes and more itching but beyond those physical symptoms...

Eczema becomes you. It's the face you show the show the world, the hand you shake with, the arms you hug with. When you're covered in ugly rashes, you are ugly. You worry about what every new person thinks when they see you, you don't let people get very close because they'll see just how flaky and dry you are, you avoid holding hands or giving high fives, you try to be invisible because all you are is ugly. It consumes you. You waste time and money and tears visiting numerous doctors and dermatologists and allergists, only to be told three things: one, that you have incurable chronic eczema that will never get any better; two, you must control it with topical steroids; and three, you must be doing X-Y-Z if it gets worse.

X-Y-Z are the things that every magazine article about eczema will advise you to change. You take too many hot showers, you don't eat healthy enough, you aren't taking your vitamins, you need to moisturize every two hours, you have the wrong shampoo, you live in the wrong climate, you go outside when it's cold, you go outside when it's hot, you have carpets, you have pets, you must be allergic to something, you get too stressed, you use the wrong soap, you wash dishes without wearing gloves, you swim without rinsing off the chlorine, you use makeup with too many chemicals, on and on. X-Y-Z are all things you have been doing since you became one of the unlucky ones but doctors can offer no better advice than Cosmo for your $170 visit fee.

How could you not feel despair? Hundreds of people that are told day in and day out by supposed experts that they will never get better...but also that it's their own fault. Told they will never get better...but here's a list of things they should be doing if they want to be better.

All the while, they are being treated by the cause of the eczema. They are smearing on the poison that causes the pain, looking despairingly for a cure that will not be found in a pharmacy.

I know it's not my fault. I know I will get better. This makes me lucky.

We don't know how long topical steroid withdrawal will take. It gets exhausting and painful. It's a long night with no sign of morning in sight and yet you hold on, maybe just by a thread, to the hope of dawn. Try not to give too much weight to what month it is or pin hope to a certain date. At the end of the day, the only way out is through. There are no road signs and sometimes the road isn't paved. We know there's a light at the end of the tunnel, even though we don't how far the exit is.

It takes as long as it takes. It's done when it's done.

Day 258: Food and TSW (Just My Opinions)

Here is what I think about topical steroid withdrawal and diet:

1. If you are allergic to something, don't eat it.
2. If something makes you feel bad, don't eat it.
3. Vegetables are great. Eat a lot.
4. Fruits are good. Eat some.
5. If your food doesn't go bad, it's probably bad for you.
6. Yes, we all agree that the Standard American Diet is bad.
7. Yes, you should eat more real food in general. 
8. No, I don't think my diet has a thing to do with my flares. I have tried really hard to find a connection and you know what? I can't. 
9. If you can find a connection and eliminating that item makes you feel better, then go ahead and do it. That doesn't mean everyone else should do the same.
10. No, I don't think diet can "cure" topical steroid withdrawal.
11. Yes, I think it can help true eczema if your eczema is caused by food allergy/sensitive. 

Disclaimer: Obviously, these are just my opinions and you probably have other opinions. Personally, I don't care what anyone eats. I am just tired of reading all the theories on diet and topical steroid withdrawal. It seems like every question or conversation has "Eliminate this, that, and the other! Don't eat nightshades! Drink raw milk! Nothing spicy! No, wait, don't drink milk, be vegan! Actually, eat lots of organic beef! You know what, just don't eat anything - only drink water!!"

Day 249: Slowly But Surely

RSS Left Palm, a set on Flickr.

There hasn't been really too much to post about lately. I feel like I've mostly got this thing under control - knock on wood! Some days I feel a lot of pain/soreness but it's mostly doable and I haven't needed to take pain medication very often. Mostly I'm just tired of this (especially the shedding!!) and I'm ready to have normal skin!

I have been taking photos throughout this whole thing and I am going to slowly work on getting them uploaded and organized into Flickr. Here is my left hand palm starting September to today. These are just pictures from my phone but I know I have more on my camera so I am going to probably add those later today. I tried my best to take photos in similar light.

I'm surprised to see how much better my palm has gotten! I knew it did but I didn't realize how much! My hands have always been a wreck, covered in (what I thought was) eczema since I was a kid. I now know that at the beginning it was probably eczema (aka "rash caused by something but we don't know what so here's some topical steroids") but somewhere around my late teens/early twenties, it turned into topical steroid addiction. I had stopped responding to halobetasol, which is one of the strongest topical steroids, and the doctors weren't offering anything except more topical steroids.

These photos don't really show it but also the sides of my index and middle finger had the rashiness. I know that a lot of RSSers have normal palms and the fact that I didn't had me really worried I was barking up the wrong tree. But since my hands are truly ground zero and have been marinated in topical steroids of varying strengths on a regular for years and years, I should not be surprised.

Via Flickr:
Left palm - healing from topical steroid induced eczema (Red Skin Syndrome).

Visit ITSAN.org for more information on topical steroid addiction and withdrawal, side effects of long-term topical steroid use.