Lyss.. or That!?

A personal voice for eczema sufferers.

It started when I was three years old. The constant itching, the irritation and redness on my skin that just wouldn’t go away. I wanted to jump into a hot shower to wash away the pain, but a hot shower was off limits. I wore mittens when I slept so I wouldn’t scratch my skin raw. I constantly applied lotion to any area that felt dry to prevent any flare up from happening. Back then I didn’t know what was going on with my skin or why it was happening to me. Little did I know, I was not the only one with this disease. Little did I know, that in 20 years I would meet a community of people who shared the same pain as I do.

Atopic dermatitis is what the dermatologist told me I have, aka: eczema. 22+ years of going to the dermatologist and even with his prescriptions, I am still finding myself searching for something better. There is no cure for eczema but there are remedies to prevent flare ups. I have tried many remedies like the eczema diet which only consists of raw foods. I could barely last a week. You would think for someone who wants to prevent eczema that I would try harder but I want to continue living the way I want too, without having eczema guidelines on the back of my mind. I had a dance scholarship in college, but the constant sweating made my skin dry out even faster, which eventually would irritate my skin causing flare ups on my face and neck; the places I sweated the most. By giving up dance, I gave up a little of me. And when that happened, I knew I had to do something, find another way, connect with people and hopefully find a remedy that would let me live my life without giving up some of my favorite things.

I went on Youtube sometime in 2008 and searched for eczema video blogs. I saw hundreds of blogs; these blogs ranged from doctors preaching the same information to people stating an eczema cure. I heard it all before and decided to use my own voice and my own eczema knowledge to make my own video blog. I did a weekly video blog about lotions I used and sometimes, I included my food diet. To my surprise, I started gaining subscribers and receiving messages from random viewers expressing similar experiences with eczema. In just one year, I had almost 800 subscribers leaving me messages and comments every day on YouTube. It never occurred to me in the beginning that my video blogs would be helping others struggling with eczema and self-esteem issues.

I made it my mission to reply to each and every message I received. I wanted to let my viewers know that they were not alone. I gave them my advice along with the advice from other viewers. Eventually, some subscribers bravely managed to start talking about their eczema themselves on YouTube. This is when it became an eye-opening realization; I realized I was helping a community of people who just needed someone they could relate too. Dermatologists can only give us prescriptions, but being able to relate to someone who knows exactly what you are going through, is something much more powerful than the technical know-how behind the skin disorder.

Even now, I actively video blog about my eczema on regular basis. After discovering the social power that a video blog can muster up, I decided to write the National Eczema Association to tell them about my YouTube experience. They responded right away and told me that they are in the midst of changing their website, but at the same time, they are very interested in my site and feel that I have the potential to become one of their personal voices on their new, upcoming website.

What I accomplished in these last two years is absolutely astounding to me. I hope to inspire many more people and give them the courage to battle their inner skin-demons. There is a community of people looking for that same one voice. And once that voice is heard, there is nothing more empowering than knowing that you are one among many.

March 10, 2010 Posted by lyssorthat | Eczema/Sensitive Skin | | No Comments Yet

Eczema update 7/28/09

To make a long story short, the little bumps on my arms, hands and forearms have spread to my entire body. First the arms, then my legs, to my stomack to the sides of my back. I went to the derm, and they took a bioposy of my mole and another part of my skin. He told me it could either be a severe allergic reaction or I might have skin cancer.

I cried for the at least 4 days straight, but I believe the doctor just had to tell me the worse case scenario just in case it is the case. I have been taking benadryl the past couple days and I have started to see a difference. I am not itching anymore on my legs and the bumpiness is drying out. Everyone says it just looks like I have goosebumps. They are not red and they do not hurt. They just itch occasionally. The bumpiness on my legs has gone away and some parts of my back. The worse part is all over my arms. The doctor said it looked like the rash was where all of my hair follicules were. My neck and face are GOOD, just the regular eczema and no bumpiness! Thank God!

Just when I thought I was catching a break after the shingles attack, this happened.

The only thing that has changed in my life is that I have been working overtime the past 2 1/2 weeks, and they were doing contruction in our building. Maybe it was the chemicals I was exposed too?

I am currently only using Vanicream, Jojoba Oil, and cetaphil as my moisturizers right now. I finally go back to the doctor tomorrow 7/29/09 to get my stitches out and to hopefully get my results.

He said it may take up to 10 days so I might not find out tomorrow.

Le sigh.

July 28, 2009 Posted by lyssorthat | Eczema/Sensitive Skin | | No Comments Yet

Testimonials

I decided to take out TECH on my site because it doesn’t really have to do with eczema and I want to make this a community site. I really would like to hear from all of you and hopefully make this website more active.

Please write your experience with eczema under Testimonials. And please respond to other people who have written there.

Here, maybe we all can help each other.

June 29, 2009 Posted by lyssorthat | Uncategorized | | 2 Comments

Update on my crazy eczema.

Currently, my eczema is slightly under control. However, there is a dog in the house that is making me kinda itchy. I am using Vanicream, Jojoba oil, Cetaphil lotion, Cetaphil soap etc!!

I have little bumps on my forearms that are super itchy. I REALLY do not know where this came from because I have NEVER had a breakout on my arms?!? I mean the creases of my arms but definitely not my forearms? I am thinking maybe it is the Vanicream. The Vanicream is working wonders on my neck and face. Maybe it not for the body?? Will try and just use it for the face and neck and see if my eczema on my arms go away. Lets hope so!!

I currently made another twitter…twitter.com/eczema_lyss YEA ridiculous that my name is ECZEMA_LYSS on twitter but I am just trying to make a point. And it kinda goes with my name? :)

Anyway I am also taking multivitamins and purified fish oil pills. We’ll see how that goes. Changed my laundry detergent to all natural and changed my toothpaste to TOMS. Also using natural shampoos and conditioners.

These bumps on my arms are worrying me? Why must one part of my body be under control and then another part of my body go ballistic?? Is it the steroids?? Is it the lotions??

I am also currently running every other day after work. Trying to see how that changes my body. I like feeling exhausted so I fall asleep easier. Makes me scratch less..

Hope your eczema is ok :) Let me know!

June 13, 2009 Posted by lyssorthat | Eczema/Sensitive Skin, Exercise | , , , , , , , , , , | 3 Comments

SHINGLES?!

Guess what!? Those bumps that I thought were acne, is actually SHINGLES!! Can you believe that? I have shingles on my eye and all over my cheek! Only on the right side! Can you believe that? Crazy I know.

I am taking time off work and I am now up north relaxing with the family. I am pretty sure it was the Protopic!! But I could be wrong, might just be nerves? Might be nerves and the protopic? Might be the jojoba oil and the omega 3? Might be????

May 21, 2009 Posted by lyssorthat | Uncategorized | | 1 Comment

Bumps bumps and more bumps

I’m crying at home right now. I just got back home from work with a quick run to the grocery store. I bought Benadryl itch stopping cream and Benadryl allergy pills.

I am having an allergic reaction to the Jojoba oil and it was caused major small bumps on my top eyelid and cheeks. ON ONE SIDE.

One side is perfectly normal while the other side looks like I got hit by a bus. I don’t know what happened. I am completely freaking out.

My eye lid looks like my sister’s hand when it had small eczema bumps…but on my eye lid!!!

I feel better that I am writing in here. I’m not crying as much.

What is crazy though, my neck and arm eczema have slightly gotten better with the jojoba oil. I guess it works for my body but not my face.

I don’t know what to do…..somebody help!

May 20, 2009 Posted by lyssorthat | Uncategorized | | 1 Comment

Skin is good, life is good.

New products…

DHS Zinc Shampoo (Helping with scalp situation)
Organic Jojoba Oil (Uh—-MAZING!)
Shea butter, Vanilla Shampoo from Organix (Might return)
Shea butter and Avocado Oil Shampoo from Naked Naturals (Not using until my scalp is ok)
Omega 3 pills (Taken 1 a day)
Dermarest Eczema care (OK? Stops some itching)
Aveeno Conditioner (I like, been only using for a day)

I don’t know what is working because my skin is under control?!

I was having really bad neck, back and facial eczema and for some reason it has COMPLETELY subsided. I am thinking it MIGHT be the Jojoba oil but I am not completely sure.

I take showers once a day, which is before I go to bed. As soon as I get out of the shower I put the Jojoba oil on all over my face, my neck, and my back, and other problem areas. When I woke up the first day, my face was peeling around my mouth. But as soon as I wiped around my mouth area, I noticed my flare up was basically coming off. I think the Jojoba oil dried up my eczema and basically cleared it. Usually waking up with peely skin disappoints me but seriously, as soon as I cleaned up that area and moisturized again, it looked 10x’s better than the day before.

This is day 4 with Jojoba oil and I have NEVER seen my neck so clear before!!!

See, the thing is, it might have been the Giovanni organic shampoo and conditioner products that made my face, neck and back break out. I switched to DHS Zinc shampoo and Aveeno’s new conditioner line. Who knows, it might not even be the Jojoba oil!!

Maybe it is the Omega 3 pills??

See, I really don’t know because I changed EVERYTHING in one day, and all of a sudden my skin is looking better. I don’t remember when my skin looked like this?!??

My back still has some dark patches but it is clearing up. I use the Dermarest as well after the Jojoba oil sinks in. I put it on the back of my neck and on my back. I haven’t itched at night from this!!!

I am really hoping this lasts longer than a week. I am really hoping that I have figured something out.

I have also been running on a daily basis and I have been sweating….but after I feel great. Maybe the endorphins is helping balance something out.

AHHH.

May 16, 2009 Posted by lyssorthat | Eczema/Sensitive Skin | | No Comments Yet

Spoke too soon.

My skin is starting to flare!! So I’m trying to be very careful, but I think my body knows I’m freaking out and it’s making it worse.

I have this gut feeling in my stomach and when I get this feeling my flare ups become worse.

And then I try to not think about that feeling but then it just keeps coming back!!

sigh.

May 5, 2009 Posted by lyssorthat | Eczema/Sensitive Skin | | 2 Comments

A new day, a new dawn

Let it all fall down

Let it all fall down


Fall into Spring
What comes up, must come down.

What comes up, must come down.

In my last Youtube vid, I cried. Who does that?? I think I’ve gotten too comfortable on my Youtube channel! But what can I say? If I’m going to show everybody what eczema is like than I gota show em EVERYTHING…from the physical to the emotional.

My skin is weird. My arms have cleared and so has my face a little bit. I switched from using Elocon steroid cream to Protopic topical cream. I used to HATE Protopic and was SO against it. But I’m scared….I’m scared that if I keep using steroid creams that my skin is going to be even worse in the future. Sure it helps for a short amount of time, but what about in the LONG run???

When I first used Protopic it BURNED and I wanted to scratch my skin off, but this time around it didn’t burn at all!! I typed in Protopic into Google and a lot of people experienced the burning sensation too. However, after a few uses the burning sensation went away and the users experienced great results.

Even people with psoriasis use Protopic, and they have noticed their redness fade away.

I wonder why it didn’t burn for me this time around? Is it because my skin is so numb from using steroid creams? How sad if that is the case. Anyway, Protopic is safe to use anywhere on the body, so I have used it on my arms, back of my neck, back of my legs, front of my neck and my face!! And results are coming along way better than the steroid creams. I am using this only at night, even though the prescription I had from a long time ago says to use it in the day time and night time.

The redness along my eyes have subsided and the red patches on my neck has slowly gone away. I am ecstatic but trying not to get my hopes up. Anything can happen!!!

The diet I tried has been thrown out the roof. I’ve had two cinnamon dolce latte’s this week from Starbucks and I’ve had bread, pasta, burgers, fries, etc. I couldn’t help it. My friends were in town and eating salads and healthy food isn’t fun when you have company. I was going to pay for it for sure, but for some reason my skin hasn’t flared as badly as I expected.

Is it truly diet that affects eczema?? I really have no idea. I didn’t try the diet long enough to see if there was a major change. In fact, when I was on the diet that was when my eczema was the worse.

Maybe it’s my body telling me that the only way it will be happy is if I’m TRULY happy, and that means eating what I want and feeling GOOD.

I have been exercising too. Maybe sweating (not a lot of sweating) helps control my eczema?

Anyway, here are some suggestions from viewers on Youtube who have written me. I didn’t get all of them but I’ll try and add more as I write or vlog.

If you have any questions about these products I wrote the username first.

Steepaan – Oilatum Bath soak
Pred1919- Vaseline Intensive Rescue locking lotion- hypoallerginc
Valenheartlouie- Mustela Lip Treatment
Fsk1123- Indian Herbal Drink called SAFI
Lapetitchat- OPC-3 Powder from Market America
GooGoo32- Coconut Oil
720Ent- Pure SheaButter
Abonlady- Yu-be Moisturizing Cream
Nireshnr- Tom’s Toothpaste
Belladonna5- Pineapple juice on face
Dottilicious- Cardiospermun Cream
Jamesdean5000- Manuka Honey, Ponds Light Day, E45, Dove Beauty Moisturizing Cream
Cigarettesandviolets- Roche Posays, zinc supplements
Taniaboox- Aveeno Skin Relief Body Lotion
Juliasjulie- Derma smooth Peanut Oil
Sukkiphy- Lush Dream Body Cream
Doiber- Aveeno Active Naturals Daily Moisturizing Cream, Elocon Cream
Redceligts- Dermarest Eczema Medicated Lotion
Artistnsoul- Merlot Grapeseed Moisturizer

May 3, 2009 Posted by lyssorthat | Eczema/Sensitive Skin, Exercise, FOOD | | No Comments Yet

Preach this, preach that.

It is Sunday and I am thinking about not going to work tomorrow. My neck is soooo red and patches of eczema are everywhere on my face, arms, back and back of my legs. I don’t know what happened.

During the week, my skin is controllable and then the weekend hits and it goes bizurk by Saturday night or Sunday. I didn’t drink any alcohol this weekend and usually that is what causes my skin to get really nasty.

I know I did not eat the greatest, but usually if I eat well during the week, letting myself have some bad food during the weekend usually doesn’t make my skin go nuts.

On Sunday morning I woke up and it looked like someone bashed both of my eyes and the skin was so swollen that it looked like my eyes were getting sucked into my head.

Has this ever happened to anyone?! I don’t get it.

I need to relax.

I’ll be writing more soon on details.

April 13, 2009 Posted by lyssorthat | Eczema/Sensitive Skin | | 2 Comments