Finding stuff online

So I'm not new to the online world (hi, this is a blog) BUT I don't know why I haven't fallen in love with things like digg and reddit.

Well I may now!

http://www.reddit.com/r/skincareaddiction

Here is a very active list of online users who just talk about SKIN!

Have you posted there? Do you use this site? I feel like I should make it a habit to check it out a few times a month if not more.

Let me know where you hang out for info online, I would love to make a bookmark list of cool sites.

Living with flare ups.

So my January and February were both nuts. Seriously. I don't think I managed any downtime until this past weekend, the last weekend of February. I had a major major audition that made me live on edge for a week and then a final term paper due the day after. It was a stressful time.

So I needed to unwind! I went to a friend's cottage and kicked back a few beers and eat vacation food (read: sugar and fats) for 48 hours. Guess what happened?

This:

Yup. Sad Panda. 

A flare up so bad that it hurt to wear clothes. The camera doesn't capture just how raw it is (because it's still flaring!) and how much it has grown. It has turned up along my neck again and all down my back. Does your DD move around your body too? Mine used to be thighs and neck. Now it's mainly neck and back? 

I am trying to eat clean: lots of veggies, oatmeal for breakfast, no processed/added sugar, a hault on all things alcohol. It feels like I'm back in detox. I haven't started the food journal but if it doesn't get better in a week's time I think I will have to start one up again - and that means really detoxing. I cycled in Vit E cream but I find it greasy and not as good as Vit A cream but I am hitting Desperate Levels at this point!

I need to remind myself that there is no overnight treatment, that it is every action I take - I need to meditate, eat clean, and drink lots of water. I need to make sure I don't skip vitamins and pine bark. This seems so simple but then a friend's birthday is here and the party is at a bar - pop and booze = ugh. You know this story. It's hard to always stay true to your DD. 

5 Things I Will Do For My Skin

1. Drink Water like I'm a camel

2. Keep up on my pill therapy: pine bark, Vit B, D, Multi, Probiotics, *Zinc and *Omegas (which I am bad at remembering)

3. Lots of clean eating, meaning easily digested and without a lot of sugar and fat (like brown rice, green leafy veggies, oatmeal)

4. Go back to taking my tea and coffee back (sad sigh)

5. Yoga and quiet times. Gotta get that stress down!

What do you do when you flare up?

Skin irritations and Darier's

We all get the little red calloused dots. We all get what looks like a rash too. But sometime ago I noted that I got a flat burn like irritation: http://fightagainstdariersdisease.blogspot.ca/2014/10/ew-flarenew-flare.html That was Oct 2014. Here it is now:

Believe it or not THAT is "better" - it's not as raised and red, but it's still there. It's just above my waist where no clothes chaff it (if it were the 80's with highrises I would be in trouble) and it doesn't hurt at all... I just find it weird. It's the only one like it and it has been there for 4 months... Do you get these? 

I think it's THIS exact inflammation that reminds me I'm not reacting to something, I'm not "doing something wrong" like forgetting my pills or eating too much sugar (which can make this disorder worse) - nope. It's just there. And that's the way it's gonna be. Which is not fun but denying it will get me no where. 

If you have any insight into these flat rather large (it's the size of a nickel) patches let me know! I have tried all the things listed in this blog and it is still there. 

Thank you for all your letters!

I just wanted to say thanks: thank you for visiting this site and thanks for sending me your notes, comments and emails about your insights/triumphs/questions/answers/journeys. Thank you for telling your story.

I have a separate blog at my mental health website and I invite guest bloggers there to share their stories - I want to encourage community. And I think I want that here too. So many times I hear such great feedback or even a personal story of how you are dealing with Darier's that I automatically want to ask if I can report it as a blog here. Well, why not?!

If you are willing to share your journey please let me know and I will happily post it here to share to others. 

I have readers from around the world and it would be great to hear how others are doing. 

I would love to know if you are using Pine Bark or if you have found something else that is working for you. If you have had great vs. poor results when following any kind of diet or prescription.

Not many are talking about Darier's White Disorder so we might as well start up our own discussion and fight this together.

Thanks again and I hope to hear from you,

Adrianna

Ew Flare/New Flare

A new kind of flare up has been happening the past month:

The little red dot I'm used to. But the blotchy pancake thing - what the WHAT?!

I have taken this to mean that I am not eating right (I have been stress eating and just this past weekend was Thanksgiving in Canada so there was much imbibing and silly foods that made it into my stomach... I regret most all dairy items...!)

Plus I have been majorly stressed out with going back to school, online classes, work, filming, auditioning, getting a puppy and - hey, that's life! So how am I supposed to live my life and not be stressed?

I think I have to start a plan on curbing my stress, because even though I adore to be busy I shouldn't be stressing out my system. I bought some stand alone Zinc to take 

Advice? Have you seen these types of flare ups before?

Having to change (creams) is hard

Recently I had to stop using the great A Cream that Shoppers Drugmart Life Brand makes because they discontinued it. Major fail. So I switched to something in the same price bracket but at a health food store:

My face has been okay with it, but the rest of me is not sold on it. First: it smells like...roses? I think it wants to be roses. And that means there's more than Vitamin A in there :(

It's been a few weeks, and a hot summer. I spent all last week in the sun on vacation, mind you I was never in a bathing suit I was mostly covered up and always wearing SPF 60. This summer has given me a lot of freckles - so is this flare-up (see picture below) from the sun, from the new moisturizer, or…

I haven't had flat flare ups in a really long time. They have mostly been the little red dots but  I'm used to them. I'm starting to think I might have to take more than just Pinebark Vitamin B and D to deal with this again, like when I started.

I hope it's just the increase of sunshine/acting stupid on vacations and that I should probably be more careful about how much sun/sugar I'm consuming. But it could just be what it is - with age it does get worse. Here's hoping it's a blip on the radar and not a full "storm" coming on.

Oil Pulling and Darier's?

This article online made me think of a new craze:

"Topical retinoids such as tazarotene, isotretinoin, and adapalene have been shown to be effective in some individuals. Tacrolimus ointment, a calcineurin inhibitor, has been helpful in moderating symptoms in some patients. Surgical treatments, including dermabrasion, carbon dioxide laser, and erbium YAG laser, may be effective in treating localized areas. Antibacterial washes, antiseptic creams, and oral antibiotics may help with odor and skin infections. Using high factor sunscreen, avoiding sun exposure, and wearing cotton clothing may help reduce flare-ups of the disease."

-from http://www.firstskinfoundation.org/content.cfm/Ichthyosis/Darier-Fact-Sheet/page_id/892

Have you heard of this new (well old) trend called Oil Pulling?

  

You are supposed to get all these benefits from swishing organic coconut oil for 20 mins! It made me think of that article that says we DW sufferers need more anti-fungal and antibacterial washes. Maybe try this?

I tried one teaspoon of coconut oil and I have to admit I only made it to 5 mins! But it wasn't as unpleasant as I thought it would be. I can't imagine doing it with any other type of oil, and the health benefits of coconut are much higher. Do some research - see if it's for you! But clearer skin is my prerogative so why not try? I have been reading that it could be a while (4+ days) until you start to notice clearer skin and whiter teeth. I'm willing to do it for a week and see.

Would you do it? Have you? Testimonies please!