A little call out to those in the UK

I was recently contacted by Discovery Channel and Betty to see if anyone in our community would like to share their story:

The message I received from Jessica: 

The documentary we are making will follow single men and women who feel that their love lives have been affected by a medical or physical condition and as a result may not feel entirely comfortable with being open about their condition when they first meet people. We would like bring a bit of awareness to skin conditions, such as psoriasis, keloid scarring, vitiligo and eczema.  I understand that a lot of these conditions are hard to deal with because there is no simple cure and individuals may have to live with a condition for their entire life.  I wondered if anyone from the UK ever got in touch with you about Darier’s disease? Darier’s disease isn’t something we have previously featured, and it would be great to provide some awareness to a new condition.

I'm intrigued, aren't you? I think sharing our stories is necessary to end stigma and create community! I hope you message her :)

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.