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.

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.

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!

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%!)

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!

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!