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 leg...no 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:

• Baby Zinc Lotion - I am going to try this without zinc
• How A Hard Lotion Bar Helped My Eczema
• Super Easy Hard Lotion Bars
• Homemade Whipped Body Butter and Homemade Balm
• How to Make Hard Lotion Step-by-Step
• Homemade Body Butter
• DIY Lipgloss Recipes
• Crunch Betty's How to Make Lotion Bars
• Beeswax Lotion
• Non-Greasy Beeswax Lotions
• Homemade Deodorant 
• Creams, Lotions, Gels
• Make your own non-petroleum jelly

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!

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 checked....is 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!!

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