Friday, December 21, 2012

Day 225: Ouch.

TSW hurts! It's itchy and it's ugly and it's oozy and it's tiring and it's discouraging...but it's also painful. This is a post I recently wrote on the ITSAN forum about it:

Right now the pain is much worse than the itch. Up until recently, most of the time I didn't notice the pain as much because the itch was so intense that I couldn't think of anything else! But my itch is starting to be less intense (although it's definitely THERE, it's like white noise in the background that I can ignore most of the time) and that's probably why the pain is more noticeable.

It's hard to describe but for me, there are a couple different kinds of pain:
    1. Scraped - This is what I feel most often and on my arms & hands especially (which are my worst parts. Have you had a really bad sunburn? Now imagine you have that really bad sunburn all over then you fall down a gravel hill then skid across the pavement. My skin feels like that. I feel like I'm scraped all over, like a million tiny paper cuts cover my body.
    2. Sore - Especially when I have a big scratching frenzy.
    3. Skin is too tight. I don't really know how to describe this but it hurts. I try to turn my head or open my mouth and I can't because the skin is so dry and tight. I guess this sort of goes with the soreness feeling. 
    4. Burning - As if you had a sunburn then soaked the raw skin in rubbing alcohol all over
    5. Zappy nerve tingles - I've had these painful zaps all over my body sporadically but I get these in my breasts regularly and they HURT! It's like an electric zap/needle jab.

I've been taking ibuprofen or naproxen to help with the pain. I've tried long baths, soaking in epsom salts, ACV, milk, oil, anything! I've cycled through my mosturizers -- nothing, then Vaseline, then palm oil, then non-petrol jelly, then Eucerin Healing Creme, then oil, then nothing, now back on Vaseline. I just want something that sinks in like buttah! But nothing does. I found a recipe for a homemade one with cocoa butter and shea butter so I might try whipping that up soon. 

My skin is as red as it was last month, as flaky as it's always been. The itch is better than it was three months ago, but the nerve tingles are worse. I've noticed that the "itchy spots" mostly start on bony my wrists, ribs, hipbone, knee, elbow, collarbone. But even though a bony spot gets my scratching started, I defitely scratch all over!

Mostly I am just stuck. I just want my skin to stop ACHING. Even if it's not beautiful or normal, at least if it would stop hurting, that would make things easier.

Oh, well. Another day, maybe.

Monday, December 10, 2012

7 Months of Itching!!

Not much else to say!

Friday, December 7, 2012

Day 211: Shedding

I just don't understand how my body can make this much dead skin! It seems physically impossible to lose this much skin and yet...apparently it's not.

Thursday, December 6, 2012

Day 210 AKA 6 Months 26 Days

My skin has not changed in a long time. I'm just stuck. I'm getting tired of this!

Frustrated Garfield

Monday, November 19, 2012

Day 193: I Just Want To Be Pretty :(

Sometimes I can't help but feel sorry for myself. My face looks bad and my skin hurts and I itch insanely and I look hideous. I feel like I can't be the person I'm meant to be or do all the things I meant to be doing right now.

I know this is just a blip in my life - a year or two out of eighty-something is nothing - but it's hard. I know this isn't the end of the world because I'll heal and I'll be better than ever and I'll appreciate things so much more...but day-to-day is hard.

I hate meeting new people because I want to say, "I didn't always look like this! I promise." I don't want people to think I don't take care of myself because that also means they think I'm lazy and dumb and I'm really not those things, I promise.

It's hard that "taking care of yourself" usually equals "wearing makeup and doing your hair nice." What I'm doing now is actually taking care of myself, but it doesn't look that way. I know there's a graduate thesis in here somewhere about gender performance and the beauty myth, but I'm too tired to write it.

Monday, November 12, 2012

Day 186: Six Months & 2 Days!

Six months!!!! (and 2 days!)

I was hoping for a big miraculous overnight changed when day 184 rolled around but alas, I am the same. My hands and ears are very dry, flaky, and red. The skin around my eyes is also red. I wish I had happier things to post but I guess this is the nature of the beast! And I should be thankful it's not worse, right?

I have noticed recently that I am scratching a lot of habit so I am going to work on that.

It's unbelievable the amount of white flakes and powder that flies off me. It's crazy.

Monday, November 5, 2012

Day 179: Could Be Worse, I Guess

I was in a wedding over the weekend. I was at the end of my flare so my face was not very red and I wasn't too itchy. Since it was an outdoors wedding in November in Ohio, the bridesmaids wore cardigans. Thankfully! Unfortunately, the photographer had us take some photos without our cardigans so I'm sure I'll see my red red hands and arms in a wedding Facebook album soon. But I made it, wasn't too itchy or too flaky and that is all very good! In the future, I'll just look back at the pictures and be thankful I'm healed and no longer have red skin!

Sunday and Monday I've had a very very flaky face which sucks but I can deal with it. I noticed that my skin had a very bad smell, though. Those of you with TSW probably have experienced the same super awkward symptom. Sort of yeasty/metallicy/yucky. Anyway, I've noticed it before but not as intensely so I took a bath tonight with 1 c apple cider vinegar and washed with coconut oil. That is supposed to help kill bacteria. Now I don't have that weird smell so maybe it worked.

I feel like I've been perpetually flaring this whole time with times of "I'm better but still having symptoms even though they are not as intense." I know a lot of people get true breaks around 6 months and since I'm just a few days away from it, I hope I do soon!

Tuesday, October 30, 2012

Day 173: Keep Calm and Itch On!

On Wednesday, I cleaned my house for about an hour or so which made me (want to) sweat. But since I can't sweat, my skin burned instead.

On Thursday, I sat outside during lunch because it was a ridiculously beautiful day for October in Ohio. I rolled up my sweater's sleeves to give the sun a try. I wasn't in direct sun (was under a table umbrella for the most part) and I wasn't out too long. I didn't experience any burning or anything like that.

On Friday 10/26 I started having a little flare, which of course has turned into a bigger flare. I'm SO itchy! I want to blame it on either not being able to sweat or getting some sun, but the truth is: who knows?? Maybe it's one of those two things but who knows? Maybe it's because I took my vitamin or maybe it's because another day I didn't. Maybe it's because I had a cookie. Maybe it was because last week also happened to be That Time of the Month. Maybe it was because I didn't drink enough water. Maybe it's because...

Well, I could go on and on and on, but honestly, I have no idea why I started flaring again. Maybe that little bit of sun got me, maybe not. Maybe my body was just ready for its next (torturous) flare.

It's really hard to stop searching for a correlation. The truth is, there is no correlation. This just happens. And eventually it will stop happening for a bit. Then it will happen again. I don't have any control over it. All I can do is remind myself that it will go away and try not to scratch.

(Lately I haven't been too successful at the latter. But the former, I believe 100%!)

Monday, October 22, 2012

Day 165: Hanging in There!

I am 5 months and 12 days off steroids. Overall, I am better than I was last month but my skin is still not good. Red, flaky, uggggly. I am starting to get some white patches on my red-skinned stomach, so I think that's a good sign. I haven't really needed benadryl or atarax to keep me asleep for the past couple of weeks. My itchiness is less intense than in the beginning. This past weekend, I was the itchiest I've been in a while but it was still much less itchy than month 2. Yesterday I also got a bunch of tiny little blisters on my ring finger, which (of course) are gone today. It's just so weird!

I'm still using my "homemade" petroleum jelly. I use oil (I think I like the olive better than castor), a little beeswax, Vitamin E oil, and calendula oil. It doesn't make lovely lotion like what normal people get to use, the kind that's creamy and sinks right in and smells delicious and leaves your skin soft without being greasy, but maybe someday I'll be able to use that nice kind again.

Recently there have seen very compelling (as in "Not able to be refuted; inspiring conviction") before-and-after shots of several TSW patients in the Facebook group and Google group. It's very motivating and I can't wait to have my own before-and-after shots. I plan to mail them to the dermatologist I saw a couple weeks ago, along with the articles on ITSAN about TSW. Of course, a dermatologist who has been trained that TS is the first line of defense and the only treatment for "lifelong incurable eczema with unknown causes" might dismiss my irrefutable evidence, but maybe it will make him think if he sees another patient like me. 

To all of those reading this that have the same thing, hang in there! Nick from the Google group posted this, which is great advice:

In my opinion when you read everyone's posts you have to come to the conclusion that there is nothing else that could cause these symptoms.  There are a lot of us coming out the other end of this and you will too.  Do not lose faith, you will heal, you will be looking back one day and be so thankful that you pressed on and got through this.

My best overall advice:

1.  Stop questioning what you have
2.  Don't try to find cures
3.  Do whatever it takes to make yourself comfortable while you go through this

Someday this will be a distant memory for all of us. It might take longer - way longer - than we like, but what other option is there? I couldn't keep slathering myself in TS for the next seventy years of my life! It wasn't working anyway...I still had "eczema" coming out even when I regularly used one of the strongest topical steroids.

The only way out is through!

Wednesday, September 26, 2012

Day 139: Mosturizers

I don't really know how flares are supposed to be defined. I am always red and rashy-looking and itchy. However, some days I am more pink than red and my itching is minorly annoying. I can even manage to ignore most of it. On the other hands, on bad days my skin is red as a lobster and the itching is uncontrollable, even painful somehow. I say those bad days are flares.

Monday night, I had a flare. It started with hives on my arms then bright red itchy all over. Despite taking Atarax, I could not sleep until 4AM. Tuesday I was slightly less red and a little less itchy throughout the day. At night, I took a benadryl since atarax has not been working. I slept okay (still woke up scratching a couple times, but not too bad). Today I am significantly less red in most places and back to my "normal" pink. The itching is not nearly as intense as Monday night.

Moving on!

Next topic: mosturizers. In the past, I have used...EVERYTHING! Well, approximately everything! None of them fixed my "eczema" and actually a lot of them made it worse. It can say "eczema" or "sensitive skin" but that doesn't mean very much. Especially since so many of them are made with chemicals that actually irritate! Before starting TSW, I had already eliminated a ton of mosturizers/lotions/creams that I knew for sure would only make things worse. (Like anything from Bath and Body Works or The Body Shop...sigh...I would love to use those yummy smelling body butters.)

Here is a list of things I have tried after starting TSW:

  • Aloe vera gel
  • Aquaphor Ointment
  • Aveeno Baby Eczema
  • Cocoa butter
  • Coconut oil
  • Episencial Snuggly Lotion
  • Episencial Soothing Cream
  • Eucerin Soothing Repair Cream
  • Lush Celestial
  • Lush Dream Cream
  • Olive oil
  • Palm oil
  • Sarna Lotion
  • Vaseline

The one that has worked consistently is Vaseline. There is some debate about how good Vaseline is for skin, especially super sensitive upset skin like mine. For me, in general, I like to avoid mineral oil. There may not be any sound medical research to back up my avoidance (and to be honest, I have never done extensive research on the topic) but my gut feeling says, "Don't put petroleum byproducts all over yourself." Before TSW I never used Vaseline and actively avoided products with mineral oil/petroleum which is...99% of things sold in the drugstore. The only things at a drugstore that don't have mineral oil are those yellow 100% cocoa butter sticks!

I am trying to stop using Vaseline, both because I don't want to use petroleum and because I hate the texture!! I hate feeling sticky and goopy for hours afterward. Yuck. And it makes my face shiny, too. Also, there's this weird thing that happens...after I Vaseline up before bed or in the morning, I have hot flashes? I am not sure how to describe but it's like I'm being smothered in heat for a few seconds from the inside out. It doesn't burn or sting on the skin surface but I suddenly feel like I'm running a high temperature...then it goes away. I know, it's super weird! And probably not a great testament to Vaseline! 

So I made some of my own. I started with this recipe. I didn't have any Vitamin E oil. I had planned to wait until I had time to run to the drugstore and get some, but with my schedule I have been too busy. But I ended up making my jelly Monday night during my flare. I made just an ounce of it, which is about 25 grams oil and 1.6 grams of beeswax. I liked the texture right when I finished but when it completely cooled, it hardened more than I wanted. It had a tacky texture. After rolling a little piece around in my hands, it softened up enough to spread, though. I used that 1 ounce up in a day! My hands feel much softer and not sticky like Vaseline. There was no burning or stinging or weird hot flashes! 

I also had some calendula oil. Others on the google group have said it's good for itching. So I tested a patch on my burning/stinging. I am not sure if it helped with the itching...I didn't notice any excessive itching on that spot, so I decided to add a little to my jelly recipe in place of the Vitamin E. This morning I made a second 1-oz batch, adding the calendula oil and using a little less beeswax so it wouldn't be as hard when it cooled. I like the texture better. Can't say if the itching was helped by it, since I'm at my normal non-flare itch level. But I used a lot on my hands and neck and neither of those areas are itchy at all, so maybe it helps? I'm not sure. It makes my lips very soft, too!

Making "jelly" is easy and I have found a ton of other recipes I might make. The hardest part is actually finding the ingredients and containers. I ordered it off of a site called The Herbarie since the original site with the recipe is Canadian. As far as costs go, it cost about $20 (incl. shipping) for 1 lb (~500 g) castor oil, 4 oz (~114 g) beeswax, and calendula extract oil 1 oz (~28 g). With the original recipe, this makes 17 oz jelly and I'll have a ton of beeswax (89 g or at least 3 more 17-oz batches) and calendula (23 g which is at least 4 more 17-oz batches) left over for another batch. I can't do anymore math but I think that works out to less than I'd pay for Vaseline! If I'm wrong, I don't care!

I ended up reusing an empty Lush 1.5 oz container. I read on a blog that you can use canning jars so I might get one when I end up making a big 17 oz batch. 

If you want to use something similar but don't want to make it, you could try this Live Clean Non-Petroleum Jelly which seems pretty affordable. MadeOn Skin Care Products also has some good products (and I will probably copy some of their ingredient combos in my own stuff), though I didn't see one that was specifically like Vaseline.

For my own future reference, here is a list of other recipes/ideas for homemade lotions and thingS:

Wednesday, September 19, 2012

Help for Abigail!

This little girl has Red Skin Syndrome and is having a terrible time right now. Her name is Abigail and she is 28 weeks off topical steroids. We are raising funds to help her get from Canada to California to see Dr. Rapaport. Are you able to donate? If you can, click here to go to ITSAN donation page. Click on DONATE to donate via Paypal. Once you enter your amount and log in/sign up for Paypal, there is a link which says "add special instructions to seller" where you can note that it's for Abigail. Please donate if you can and help this little girl!

Tuesday, September 18, 2012

Day 131: Better or Worse? Better or Worse?

Last night I started my class to get STNA certification (a pre-req for the nursing program I am applying for). It went well, but I am really concerned about all the hand washing we're going to do! You have to wash your hands before and after everything! Even before helping someone put shoes on! I get that it's for health reasons but I don't know how my poor hands are going to take that!

Anyway, my skin is about the same. Itchy but I can function. I think I might have some slightly whiter patches of skin on my chest and arms...

I also might be delusional since the first thing I do when I wake up is stand in front of the mirror and scrutinize myself for any changes. It's like when you get your eyes it better or worse? Better or worse?

I can't wait until my skin isn't the #1 thought in my head all the time!!

Sunday, September 16, 2012

Day 129 (photos)

I think I'll title this "Watching Paint Dry" because that's really what this slooooow process is like. Over the past two weeks, I've taken a couple pictures of my left hand. You can see minute progress there.
I feel like I am always in a flare. Some days are better, but those "better" days don't last long and I'm still red and itchy - just less than other days. It's so hard to be patient! Not only am I tired, itchy, and uncomfortable but looking like a leper takes a real toll on your self esteem.

Unless you are me, these pictures probably all look the same. If you are me and desperate to see any improvement, then you will notice tiny minute improvements. If you are me, you will also note that you are less itchy today than you were on 9/10 (when the first photo below was taken) and even LESS itchy than when the photo up top was taken... but if you are me, you will admit that although you are less itchy, you are still pretty darn itchy!



9.12.2012 - I had a LOT of shedding that day. It was disgusting! 



9.16.2012 - skin is slightly "elephanty" on my wrist when compared to 9/10. Also the color in this photo is accurate - and is significantly less red than the also-accurate-color on the 9/10 palm pic,
Last week I tried working out for the first time in a loooong time. I did the first day of the Couch to 5K program. It was weird because my underarms and lower back (which do not have red skin or rash) sweated. My arms, though, did not. Normally I would have a nice sheen of sweat on them but not this time. The worst part was they BURNED. I'm sure most people reading this have experienced the painful stinging burn after using a lotion/soap/makeup that you are sensitive to. It felt like that and didn't stop burning for quite a while after my workout was done.

I know this - no sweating and lots of burning - is a common symptom of RSS so I take comfort in the discomfort! There's a light at the end of the (very long) tunnel.

I am going to make my own mosturizer - found a couple of recipes for a non-petroleum jelly and a thick emollient that I am going to use. I also picked up an Aveeno Baby Eczema lotion since a lot of people on the ITSAN group said it didn't irritate. I just need something that ABSORBS, especially for my face. I'm tired of being so sticky and greasy!

Monday, September 10, 2012

Day 123 (photos)

I am officially at 4 months! I can't wait to be at 6...then 8....then 12...until this is all just a vague memory! :)

FACE: Face has been okay for a while. My trouble areas are my chin and eyelids, but even those aren't that bad. You probably wouldn't think much of it if you saw me. Maybe that I looked tired, but that's about it. My chin and jaw are flaky and itchy. It's really hard for me to NOT scratch there but I try to because the skin breaks so easily there. My ear lobes are flaky and like to ooze, so that's fun.

NECK: Pinkish red like the rest of me but itches only rarely. This is the place my TSW rash spread out from and it was the last place that got TS.

Unforunately, it only goes downhill from there! My trunk is covered in red itchy skin. The tops of my thighs and backs of my legs are, too. My arms are very pinkish red and sooooo itchy all the time. My hands are just plain gnarly looking. I started a serious shed today so there are huge flakes falling off me all the time...most of them are coming from my hands.

This last picture shows the palm of my hand. Sorry about the lightening differences. The color in the palm picture is most accurate, though. Also see that circle on my palm? THAT is what makes me doubt myself and wonder if I'm on the right course with TSW. It seems like nearly all those with TSW have a clean palm, whereas rashy! It was a small perfect circle in the middle of both parms but has spread. The derm I saw said rashes get bigger because of scratching. I don't know if I agree in general but I think that might be the case with my palms because the itch there is awful and the skin tears up really easily if I scratch. 

Friday, September 7, 2012

Day 120: Dermatologist Visit >:(

Yesterday, I saw a dermatologist. He was ***thisclose*** to getting it...

For instance, he said that topical steroid addictions exists...but he thinks it only happens to people who use it on their face or genitals. I used it on my face, not the other region luckily. He said that within "hours or even minutes" of stopping, a flare would start so a person who has topical steroid addiction (on face/genitals since it wouldn't happen anywhere else) would need to reapply topical steroids several times a day. If I wasn't applying TS to my face daily and more than once, my face probably wasn't addicted. Also, my face looks fine. 

(Never mind that I am not supposed to be this pink or that for the first few weeks, I did have red rash on my face then for a few weeks after that my skin was raw on my chin and jaw or that my eyelids are always red or that I itch ALL THE TIME on my face. But yes, my face doesn't look that bad, that's true. ***grumblegrumblegrumble***)

He said that people who use oral steroids (he mentioned prednisone in particular) often flare when they stop it and usually end up with eczema worse than what they started with because the body gets used to the artificial cortisol and doesn't produce as much naturally, becoming addicted to the steroids.

Later on, he said if I was using TS for as long as I had and all over in many different places and at the potency I was using, I might as well have been taking an oral steroid because of the amount of systemic absorption. To me, this says, "Topical steroid addiction/withdrawal is real! And based on my history of TS use, I have it." The doctor, on the other hand, a learned man of medical science, just wouldn't connect the dots the way that I did...

If long-term high potency topical steroid use = oral steroids...
And oral steroids = addiction & flare upon cessation...
Then.....isn't it possible that long-term high potency topical steroid use = addiction & flare upon cessation?
I say wouldn't on purpose. Wouldn't connect the dots because when a patient is standing right in front of you saying, "Look, doc, I have all these syptoms, this is my history, here is all this research I've found," and your only answer is to ignore the papers she's brought and say, "That wouldn't happen. Skin thinning is the only side effect to be concerned about. You just have out of control eczema."

He told me all about eczema, asthma, and allergies, as if I've never ever heard about this ~*triad*~ before. They always assume I have these things and when I say, "Nope! Don't have asthma, don't have allergies, neither does anyone in my family. I just have itchy red skin." Like all the other doctors before, he answered that I probably do and don't know it. "I've been tested for allergies and I have no breathing problems," I tell him. He says the one allergy test I did wasn't a patch test so it barely counts since it's too basic. He said that if I did a patch test right now, it would show that I'm allergic to "practically everything" - dust, pollen, grass, perfume - everything environmental and none of it useful because "you can't just live in a bubble!"

It makes me want to laugh because...NO I DON'T HAVE ALLERGIES. I don't have hay fever, I don't sneeze around flowers, I don't wheeze, I don't get itchy in the springtime. Doctors are always so sure of themselves! I asked then if I could get a patch test and he hemmed and hawed and said there's always a huge waiting list for this specialist that does "the best, most thorough test" and it wouldn't be useful anyway because "you can't just live in a bubble!"

He said that a lot of people have food sensitives but that removing them from the diet makes barely any difference and is usually too much work for people. "Eggs and milk are a common one but eggs and milk are in everything. You'd have to read every label! Plus I can't ask someone to stop eating dairy. Who's going to do that!?" he said.

Every vegan ever. And a lot of other people. But yeah, I mean, totally. Who's going to bother reading labels and live with this itchy awful nightmare of a rash? No one. (insert eyeroll)

And also anyone who cares even a little about what's going into their food. I may eat eggs & dairy but I don't want to eat transfat or HFCS or artificial dyes & flavors or foods that sound more like lab experiments than I'm already reading the labels!

The positive - he is the first doc I've talked to who has said that people can be "sensitive" to food and not just allergic. In the past, docs have made it sound like the only thing that counts is severe allergic reaction. If you don't go into anaphylactic shock, you're fine! So I guess that's....something.

He says oatmeal contains nickel and nickel is an irritant for most people with eczema, so I am probably irritated by nickel. Stop taking oatmeal baths and don't wear nickel jewelry. Uh, okay. (insert more eyerolls) Never mind that I haven't worn jewelry in forever, that I am not allergic/sensitive to nickel or anything else, that oatmeal baths are almost always recommended for itchiness, that if I WERE allergic to nickel I'm sure the button and zipper on my jeans would cause far more irritation that a half cup of oatmeal...but yeah sure, you're the doctor and I am just a layperson who knows nothing.

He said the classic eczema line that I have heard a million times: "It's the itch that rashes! First you itch, so then you scratch, which causes the rash!" I just...cannot even deal with this line anymore. I HATE victim-blaming and to me, that sounds an awful lot like it. "Just stop scratching and you won't have a rash." Sure, I'll stop scratching. Thanks, guy! I never thought of that. Also, please explain how I have these rashes on places I don't/can't scratch if it's all my scratching's fault.

He did a skin biopsy. He thinks I might have scalp psoriasis and eczema. He asked if I would use any topical steroids, even just on my scalp, and I said no! We talked about trying UV therapy but I'm not sure if I want to try it this early on in TSW. Plus it requires driving across town during rush hour several days a week to sit in a light box for (literally) two minutes. And I'm sure it's tres expensive!

He said to try Sarna cream, which has no steroids and helps with the itch. However, the label for Sarna cream specifically says don't use it long-term and don't use it on a large portion of your body, so it's not going to be all that helpful. He said if I don't mind the texture of Vaseline, it's a good choice. He said baths are better than showers and I should take at least a 15 minute bath every day. He said he is sure that I "just" have lifelong eczema and there is not much he can do if I don't want to use topical steroids. He asked me several times during the visit if I was sure I didn't want topical steroids, if I thought maybe I would change my mind and take a prescription with me just in case, if I was worried about side effects like skin thinning because it's so rare I shouldn't be "steroidphobic."

It was a complete waste of time and money. So I did the only rational thing: stole the latest O Magazine from the waiting room and took a handful of complimentary mints on my way out. :-D

Monday, August 27, 2012

Day 109: Trying To See The Glass Half Full

After I stopped feeling sorry for myself on Friday, I thought about the (small) postive changes that have happened so far. Although my neck is still red, it doesn't itch as much and it doesn't look dry or raw. Also, my face has been much better. It's still redder than it should be and looks splotchy but it looks more like "too lazy to wear makeup" than "tragic skin rash." And the texture hasn't been too bad lately.

My neck was the last place that got topical steroids. There was a patch of eczema there (aka nummular eczema which is the dumbest "diagnoses" ever and is basically no better than saying "Looks like you have a rash.") and I was worried it looked like a hickey so I slapped on some TS. I stopped using TS a few days later and my neck and hands were the first to break out.

My face probably got the LEAST amount of topical steroids but since the skin there absorbs so much more, who knows what difference that makes in the end. And although I tried to apply sparingly on my face (so worried about wrinkles hahahaha which sounds if WRINKLES were the worst thing TS could do), I still used it on my face for at least 6 years. That's a lot of poison.

So after all that, I put on some makeup, fixed my hair, and went out. My makeup didn't flake too badly (I only noticed some dryness around my mouth) and of course, it didn't burn or anything (I would have washed it off if it did!).

As far as sleeping goes, Atarax did not really work. I still kept waking up itchy but I fell back asleep a lot easier than normal. Maybe tonight will be better?

Friday, August 24, 2012

Day 106: Maybe House Would Be A Better Doc For Me...

I saw my doctor today. I haven't seen her since I started this. I know from experience as an "eczema" patient that as well-meaning as doctors are, they are useless for this. ("THIS" meaning any type of red dry itchy skin.) The answers are always always the same:
  • "You have eczema."
  • "You'll probably outgrow it." 
    • This eventually changed to: "You have chronic lifelong eczema and you will never outgrow it."
  • "Use these topical steroids."
  • "Take an oatmeal bath."
  • "Pat yourself dry after a bath, don't rub the towel."
  • "Don't wear perfume."
  • "Use a good lotion. Have you ever heard of Cetaphil or Aveeno?"
Again and again and again and again. They have been telling me this since I WAS FIVE. You mean to tell me there has been no advancement in "chronic lifelong eczema" in the past TWENTY years? We haven't figured out ANYTHING else to try yet?

So I figured, what's the point of even wasting a copay when she's going to tell me the same thing everyone else has told me? My mom and aunt wanted me to go see a doctor. My friend who's a nurse and all her nurse coworker wanted me to go see a doctor. And I thought about it but...again, what's the point? 

Then someone on the ITSAN forum posted about cyclosporine and how his doctor was really helpful. This gave me hope. Maybe I could try cyclo for a few months and give myself a break. I am so tired and very unhappy with the way I look and it makes everything so much harder. So maybe I could try this and maybe it could help and maybe I could pretty for just a few minutes. I got SO hopeful.

That was stupid.

I explained everything I had learned about this and I gave her the articles. I explained that EVERY DOCTOR has told me the SAME THING for twenty years. Twenty years is a LONG time to have no other treatment option. This is it? Use topical steroids forever even though they don't work and you have to use them daily just to look a little normal? That's the ONLY treatment option? srsly?

She was very sympathetic and I thought...maybe this will work and she'll be on board or maybe she's heard of this or maybe she knows someone who has worked with patients like me.

Then she said, "This article is very interesting, but I can tell you that what we're looking at is very severe eczema. You have nummular eczema on your arms and maybe ringworm on your stomach. I don't feel comfortable prescribing cyclosporine until we have a skin biopsy done so I want you to see a dermatologist."

I looked up ringworm and the only Google images I can find that look ANYTHING like me are from that Japanese doctor book that's online...and says, "This is ACTUALLY topical steroid withdrawal...and see how it went away months later!" And then I looked up nummular eczema...and again, the only pictures that look ANYTHING like me are actually topical steroid withdrawal. Nummular eczema is characterized by coin-shaped patches...I have FULL ARM SLEEVES.

I know it's "only" been three months, but I was hoping to be WAY better by now. I haven't seen much improvements. The only improvement I've seen is that my face is less rashy than the first month (although it's still red, especially my eyelids, but the skin isn't as dry or itchy there) and when I've had swelling in my face and eyes, it's gone away within a day or two. My neck was incredibly bad in the bad in the beginning but now it's a lot better. I've seen my skin cycle - Saturday night I started flaring, then Sunday-Tuesday night I had very red, hive-y, itchyitchy skin, then by Wednesday I'm ashy-red and flaking like a snow storm.

I've had this cycle happen weekly/bi-weekly. A really bad couple days, an ashy-red flake day, a couple of better days, then suddenly my arms start burning, I start getting hives up and down my arms, then everything is REDREDRED and itchier than I ever thought was possible.

I know I have to be patient. But I don't know if I can just wait a year without seeing any real improvement. It's killing my self-esteem, I sleep terribly,  and all I can talk and think about is being tired and itchy and ugly and tired of being tired and itchy and ugly.

Monday, August 13, 2012

Day 95: Part Snake?

Counting the days makes me feel a little bit like I'm stuck in prison or on an island.

I had very little itching (for me) until this evening when I got home from work. I've been incredibly itchy ever since - even tried rubbing my back against the corner of a wall! It did not work very well. I took a long oatmeal bath, which helped a little but I still have the itchy-crawlies & burning on my hands, arms, and back. For my oatmeal baths, I just use plain oatmeal, put it in a nylon that I've cut, tie it, and drop it in the tub. Once it gets wet, you can squish out the "good" stuff...aka collodial oatmeal. Squashing the oatmeal bag is also kind of theraputic, like a stress ball.

The raw spot on my wrist improved a little today. It wasn't oozy, which is a good sign, and hurt much less. I was very careful to NOT scratch it, but I did scratch right next to it...almost too much but caught myself in time so I think it's okay. However, I have a new weird thing to report today. I felt a sharp painful tingle on the raw spot of my wrist. I looked at it and said, "Stop that!" (I know, it sounds crazy but it really hurt and there is nothing else I can do about it!) Then I noticed that the skin on the raw spot was coming off! I touched it and a thin layer of skin about the diameter of a quarter just flaked right off! I didn't pick it or anything, it just came off. I guess I'm shedding skin like a snake now. That's a new one for me!

Sunday, August 12, 2012

Day 94: Ouch My Hand!

Last night, I woke up around two because I was scratching the bejeezus out of my wrists and hands. I slathered on some more Vaseline then put "gloves" on. (Gloves = a pair of clean socks because I couldn't find gloves and I was too tired to look very hard.) In the morning when I woke up, I had this lovely splotch of raw open skin that was oozing. The picture doesn't really show you just how red it all is, but it's the best I could do. It hurts really bad so I've tried to keep that hand still because every time I move it, it hurts. It keeps oozing, too, which is so gross. The weirdest part about RSS is that tomorrow, this spot will probably be gone (as long as I don't scratch the bejeezus out of it tonight) and it will just be my "normal" (red) skin.

Thursday, August 9, 2012

91 Days: Itching + No Sleep

I would really like to STOP ITCHING for one whole day. That would be AMAZING. I am up, once again, in the middle of the night because I woke up scratching and itching ALL OVER, writhing around trying to do a full body scratch on my full body itch. I have to get up and get ready to go to work in a few short hours and I just cannot get any sleep. I am sure I have claw marks all over me, and just my luck, it's picture day tomorrow. Fantastic. Don't even ask me why it's picture day, it's so stupid but they think ugly red face clawmarked me is going to smile pretty for the camera. YEAH RIGHT.

I wish I could take a few months off my job until this is OVER. It's not fair, I just want a normal life and normal skin and mostly I WANT TO STOP ITCHING. It's just SKIN. It should NOT take this long. And I've barely made a dent in how long it will probably take. I feel like it's impossible to describe how impossibly terribly itchy this is because it sounds so petty. "Itchy" sounds like the most petty symptom ever, completely eye-rolling, like it's not like I have a colostomy bag or I'm missing an arm or something. But it's like a parade of fire ants crawling over every inch of my body all the time, no matter where I am, all the time and it's terrible and it itches and so I scratch it and then it burns or bleeds and then it itches all over again and I can never get it to stop or even just simmer down.

And I'm so ugly. Again another petty symptom, but you walk around town looking like this and see if you're rolling your eyes.

I seriously do not know how I have a boyfriend right now or why my friends still talk to me. All I want to do is curl up in a tub of oatmeal and fall asleep for the next month. I'm so tired. Every day I wake up and I just want to go back to bed. And when I'm at work, I just want to take a nap. And when I get home, I want to sleep forever but I can't even do that because who can sleep when you're this ITCHY?

This is the stupidest syndrome ever because there's no real timeline. Sometime, many many many many months from now, you'll look better. And many years from that, you'll be better. And okay, it still might show up sometime for no reason even many years from now but hey! It could be worse. You could be a hemophiliac, so look on the bright side, yeah?

And every time I type the word ITCHY, I'm reminded about how stupid and petty this symptom looks. I wish the word itchy didn't seem so slight because ITCHY just doesn't seem like anything unless you're going through this and then it's everything all the time and it's horrible but I feel stupid saying anything about how terrible it is because..."So what, it's just a little itch." But it's not, it's so much and so much worse than that, and there's no way to convey that unless you have this.

I know I am just blowing everything out of proportion and looks don't matter and this too shall pass and blahblahblah but it is awfully freaking hard to see how this is EVER going to pass when I am STUCK in the same spot dayafterdayafterday. ITCHY. RED. HURTING. Zero improvements.

Every day I want to slather stupid toxic topical steroids over every inch of my body and give up. I don't care if it won't work forever and right now I do not care that it's poison. I just want to slather it on and let it sink in. I am so tired of fighting this. I am tired of not sleeping because of the itch, I am tired of the pain, I am tired of being ugly, I am tired and I am thisclose to giving up. Why am I losing months of my life to my stupid skin? How is this fair?

Tonight I am just terribly exhausted.

Wednesday, August 8, 2012

90 Days (Week 12): Yeah, So....Still Itchy

Still itchy. Full arm rash, including large circles on palms. Neck, shoulders, chests - check! Spots all over my stomach - check! Upper legs, yup. Back of lower leg - a little bit. Face - uh-huh, that too! Especially my eyelids and my earlobes.


I'm hoping it's going to start looking better soon. It's hard not to be down when you look like a leper.

Monday, July 30, 2012

Day 80 (Week 11): Ugh Vaseline Sucks & Sparkler Pain

Last week, I had a couple days that were better. I gave up on no mosturizers, natural mosturizers and Eucerin. Yesterday I used Eucerin because I happened to have it in my purse while I was at BF's house. Today, exactly 24 hours later my arms started getting redder and then hives broke out and now I'm just an itchy mess. It may not have anything to do with the Eucerin (probably it doesn't), but I'm going to avoid it from now on.

I'm using Vaseline now which I don't really like but my skin apparently tolerates it the best. I don't want to use it. It's goopy and gross. Before TSW, I actively avoided stuff made with mineral oil and well, that's the only ingredient in Vaseline. I don't like it, but everything else stings or burns or makes me itchy or redder. I have to use something - otherwise my skin is so tight I can barely move or open my mouth.

So here we are: Vaseline.

I can't wait until this is over so I can never ever ever use it again! It's so nasty. I hate it.

Today I also got the "sparklers" or nettles. My hands and arms were stinging so badly, it was like I was being poked by a bunch of tiny needles over and over. I was driving home from my friend's house and I just wanted to die. It hurt so bad.

Sunday, July 22, 2012

Day 73 (Week 10): Still?

I am very sad because my face is so flaky, my hands look like dragons, and I have itchy itchy patches all over me. Nothing is getting better, even though I know eventually someday it will. I have to go to a relative's baby shower next week and I do not want to, because I'm sure everyone will want to know why it looks like I rubbed my face with sandpaper. Maybe I'll post a little note on Facebook. "If you see me and I'm ugly, it's not my fault!"

Boyfriend has been extremely good to me through this and acts like he doesn't notice at all. Which is kind and I appreciate it. And he also hasn't gotten upset when I don't want to do things because I'm too itchy/tired/ugly.

I'm going to the gym tomorrow for a workout class. I don't want to but at least if I'm doing something, I'll feel like I'm doing something to make this go faster even though I don't think it has anything to do with it.

I can't believe it's been only two and a half months. It feels like foreverrrrrrrrrr.

Friday, July 13, 2012

Day 64: Letter to the Epidermis

Dear Skin:

Thanks for looking better today. I mean, yes, I still have scary cracked red hands but you are better than you were yesterday and a hundred times better than you were on Monday. My face is almost normal colored and the rash on my neck has faded. My arms are still rashy but the red is more of a pink now, which I can deal with right now. Yeah, my legs have just joined the rash wagon, but hey, I can wear jeans.

I'm very happy that you look a little better! So let's keep it up, okay? You can get better or you can stay the same, but please don't get worse. Okay? I just started using palm oil on you. It's a little scary to use new things because I don't want to make you angry, but I think you like the palm oil better than Eucerin. I hope I'm right and I hope it helps you.

Thanks in advance for your cooperation!


P.S. I just want to be pretty again, okay?

Monday, July 9, 2012

Day 60: This Sucks!

I'm officially 2 months in.

I'm scared that I don't actually have RSS - what if I really do have incurable lifelong eczema and I'm just making everything worse by doing this? 

My hands hurt so bad I can't even explain it. It's like... You know how you crash a bike and skid across the pavement, skinning your hands and legs? Or how you sit in an awkward position for too long and your leg falls asleep? Have you ever fallen into a pine tree and got stabbed by all its needles? And you know that throbbing after you run your shin into a table leg? And of course, burning like a sunburn. It's like all of those at once every single time I move my hands. It hurts and it's hard to even think straight sometimes.

It's an ugly ugly sight.

My hands used to have a clear demarcation line, stopping right at the wrist, but now the borders are moving, red scaly skin climbing up my arms to meet the red scaly patches that were already on my forearm. My eyes were so swollen today and it hurts to blink because my eyelids are so tight and dry. It's all over the back of my legs, shoulders, back, ears, everywhere!

I am a mess.

Friday, July 6, 2012

Day 57: Vacation, All I Ever Wanted!

Here's what's been happening:

June 15-23: I went to the beach. I was nervous about it with my skin, but it was pretty great and just what I needed. The morning of the drive down, I woke up with elephant hands - swollen rolls of skin on my hands. It was strange.

The ocean water felt awesome on my skin. I was worried so I just put a hand in first to see what would happen. Nothing happened!

After a couple days, the flaring died down a LOT. I was less itchy, less dry and barely red at all. Well, barely red to me -- people who weren't me still thought it was really red. I got asked if I had a sunburn a bunch of times. Nope! It's just my skin.

On the drive home from the beach, I got progressively redder. The norther I got, the redder I became. 

After a couple days home, I was right back to where to I started. I wondered if maybe being in the ocean and the humidity had helped. So I've been taking epsom salt baths and using a humidifier in my bedroom. It probably doesn't help. A couple days ago (day 52), I woke up with elephant hands again. Then for one day, my skin was a little better. Then I was back to "the new normal" aka red itchy scaly dragon. 

I accidentally scratched my face and neck really badly so I'm trying to be very careful. I read on another blog that moisturizing too much can be a bad thing so I've decided to cut down on that and see what happens. Today is my second day and my hands are so tight that I can't flex them. I keep feeling a stabby tingle on my arms. It feels like falling into a pine tree and getting poked by all the needles.

I have had some trouble sleeping and even when I get enough sleep, I've been exhausted.

Next week, I'm going to my boyfriend's parents' house for the first time. I hope I stop being such a dragon by then!

Friday, June 8, 2012

Progress Pictures

Day 6 - Left Arm
Day 24 - Right Hand, it's a little swollen and (obviously) red.

Day 28

Day 28

Day 6
Day 28

Day 6

Day 28

Day 29: Feeling Down As The Red Creeps Up

The puffy eye went away, although both of my eyelids are very red. But even though the puffy eye went away, I'm feeling a little down today.

I can't stand when things touch when I wash my hair, I have to get it up into a bun ASAP. My shoulders & upper back is flaring so I hate when my wet hair touches my shoulders. Can't stand it. I have actually been thinking about cutting my hair short...I don't think I will, but I've thought about it. I'm also having wardrobe problems. I can't stand most of my work-appropriate shirts. I just want to wear something light-weight but long-sleeve, and loose. I found some summer-weight button downs at Old Navy and those feel nice. They are definitely not flattering though!

Last night, I was supposed to hang out with my boyfriend over at his place but I got SO ITCHY. It was awful. I actually had to leave because I was so itchy. When I got home, I covered myself in Eucerin, popped a Benadryl, and passed out.

I haven't really had an appetite. I've been hungry, but haven't really had a taste for anything. Some things sound worse than others, but nothing sounds good. So instead of wanting to make something really delicious (and potentially even healthy for dinner), I just get Taco Bell because I have to eat something and fast food is easy enough. I actually skipped breakfast yesterday because everything sounded terrible. I never skip breakfast, even if I just eat a granola bar or some awful oatmeal.

Yesterday, a coworker and I were carrying supplies back to the copy room and she said, "Oh, no! Your hands are so red! The box must be hurting you!!" She used that really sympathetic sad voice - you know, the one people use when they see a sick puppy. I said that I just have eczema (which is only sort of the truth, but is an easier explanation). My hands and arms look awful, scaly and red and gross. I look like a dragon.

Another co-worker saw my jar of Eucerin and said she uses that for eczema. I said I do too (sort of). "Oh, I just love that stuff, isn't it great?" she gushed. "I just get the worst eczema, it gets so bad!"

"Me too," I said, wondering if maybe this woman with perfect-looking skin knows The Secret.

"I get this dry spot behind my knee every winter and Eucerin just gets rid of it in no time!"


Hmmm...I think maybe her "worst eczema" is maybe not as bad as mine...

It's so depressing to watch the redness creep slowly over my body, climbing up my arms and around my neck and down my back. This is what I've tried to prevent and reverse my whole life, the reason why I used topical steroids. I'm just turning slowly into a monster.

Wednesday, June 6, 2012

Day 27: Swollen Eye

Itchy dry red arms, I can deal with. Hands that better belong on a seventy year old washerwoman? Well, with the eczema, I've had those since I was 12 so I'm used to it. Have burning red itchy skin all over my neck? No problem, just like a sunburn!

What I can't deal with is the swollen eye I've just woken up to. I've always had dark circles (which I affectionately refer to as my "Romanian orphan eyes") but never, ever bags or puffy eyes. I'd read all those tips in Cosmo about hemorrhoid cream, ice packs, and frozen spoons -- so happy that at least there was one thing my body got right! No bags!

That's no longer true today. I woke up looking like I'd been punched in the left eye. (For the record: I have never been punched in the left eye. Or the right one, for that matter!)

I hoped that I would skip the facial symptoms. The rest of my body - yeah, sure, fine, I'll wear long sleeves and pants. But my face...? You can't hide that very easily.

Stopping steroids is absolutely the right thing to do. Even if it turns out that I don't have topical steroid addiction (doubtful considering my history), topical steroids are NOT a long-term solution for chronic eczema. Period! It is not sustainable.

I just wish cessation didn't come with all these other awful symptoms.

Monday, June 4, 2012

Day 25: Sore Lymph Nodes

For the past day or two, there was this spot in my neck just  that was just sore and achy. I mentioned it to my friend who is a nurse and she said, "You have a lymph node there."

Oh. Given what I've been learning about TSW...sore lymph nodes make sense! Apparently, it's the jugulodigastric lymph node, if we're going to get technical. It's the ones that swell when you have strep throat. I guess they are trying to flush out toxins...or something. I am not a doctor! But I don't have a sore throat or anything else that would indicate strep throat, so it must be TSW-related.

Many people going through topical steroid withdrawal experience the same thing: swollen, sore, or lumpy lymph nodes. Those that have made it "to the other side" have reported that the lymph nodes go back to normal. It's just one of the many symptoms your body may go through as it tries to flush out the damage caused by topical steroids.

Tuesday, May 15, 2012

The Past & How Today Is Going

This isn't the first time I've stopped using steroid cream. I've gone without it before, but not by choice. In the past, I stopped using it because I ran out and needed a new prescription. In the past, I try to wait it out for two reasons: "Maybe it will go away if I stop doing XYZ or start eating ABC or..." and "I don't have health insurance and it is just too expensive right now."

I have a pretty low wait-it-out tolerance, usually only waiting a week or so after the rash starts up before getting a new prescription. It gets bad, though, and so itchy! Yesterday was that point. If I didn't know what I knew now, yesterday I would have gone to see a doctor - any doctor! any clinic! even the ones inside of grocery stores or next to gas stations! - and gotten a new prescription.

I don't need to do that now, though. I have a half-tube of steroid cream and another refill on the prescription. But I'm not going to use it, no matter how ugly I get. I'm really scared, though, when I see pictures of other people who stopped using this stuff and how painful their skin gets. It's not like I can just quit my job and stay home, either, if it gets too ugly or uncomfortable. I don't really have a choice there - I have to go to work. Period.

So far it hasn't been too bad. The last time I used steroid cream was probably about a couple weeks ago on my last rashy flare. I think I last used it on my neck, earlobes, and hands. Usually I get a rash, use the cream, then it goes away for a little while. When it starts coming back, I hit it again with steroid cream. There has been less "break time" between rashy times within the past couple of years.

I was using the "strongest available" eczema medicine (according to my doctor) which is HALOBETASOL PROP 0.05% CREAM (a.k.a Halobetasol propionate). It's a Class 1 Superpotent steroid...which is scary! And scarier, even, I didn't know that. I even read the insert...but I don't remember reading CLASS 1 SUPERPOTENT. Maybe I ignored it because I felt the benefit (normal, non-rashy skin, ability to leave the house without feeling hideous, end of the itch) outweighed the scariness. Or maybe I didn't read the insert as thoroughly as I thought - after all, someone with a medical degree says it's okay and really, who am I to question it? And I was told that this was IT. This was the ONLY thing I could do to avoid having a terrible ugly rash all over.

I wish someone with a medical degree had said, "CLASS 1 SUPERPOTENT!" to me when prescribing it (instead of "stronger") because....


TODAY: That picture also describes how my face feels today, too! When I woke up today, my face wasn't too bad. It was tight and dry, but it wasn't too flaky and it was only a little red. It burned, though, especially when I splashed cool water on it then put a little EVOO on. Fast-forward a few hours and my face is so red and splotchy! I look like and I feel like I have a sunburn - it's hot, dry, and tight. I smile and it hurts my cheeks! My face is also really puffy but I'm sure that's more of a TOM thing. 

My skin is getting angry. My neck and shoulders are itchy and rashy, as are my hands and arms. The rest of me is okay, though. My legs are no drier than normal and I don't have any patches on my torsos.

I have a work event tonight and I hope I'll be able to put on some make-up, but I don't know if that's going to be an option. My face burns when I put anything on it (including just touching it) so I think it will be smart to avoid foundation.

Monday, May 14, 2012

The Start

When I woke up, my face felt like sandpaper. It was so rough, I could not believe it. It was also red and splotchy, and the skin around my lips was peeling a little. I used EVOO on it, then later on I used Episencial Soothing Cream. Both made my face sting pretty badly. The splotchiness has gotten worse throughout the day and I look very ruddy.

I have several rashy patches on my neck, shoulders, and inbow (aka antecubital fossa!) which have only gotten more red and angry as the day progresses. I want to itch my face off but I'm trying not to!