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!

9.10.2012

9.10.2012

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

9.14.2012

 

9.16.2012

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!

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 mine...is 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. 

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 FOOD...so 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

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 silly...as 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?

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.

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!

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.