Guest Blog: Emails from a Reader

I think it's important to keep the conversation going about what we are trying and doing to deal with DWD so after asking permission, I have the emails from a reader and myself talking about what to do around a bad flare up. Please share what you are trying and doing, success and fails are welcome - we all need to learn and lean on each other!

I just finished reading your blog.
I am reaching out to anyone who can help me at this point with my DD.
Just like you, I have and have always had it, on my neck.

This is my second worst break out and I am just so scared of another staph infection, last one turned into sepsis and landed me in hospital.

I hope to hear back from you.I have been very lucky in the past week. My roaccutane has kicked in and looks to be working, at least with clearing up weeping scabs and infection. It's still very red on my right side of my neck. Which has always been the side that breaks out and gets infected. Luckily I see my specialist in a weeks time and she can help me out that little bit more. 

What has and hasn't worked for me? Most of the time nothing works for me, I have tried several ointments that lead to a weeping scabbed up mess and often bacterial infections. A few years back when I had my last severe break out I was on several antibiotics and was lucky enough that they actually cleared it up, although I think that had more so to do with the infection rather then my dariers. I am now testing roaccutane, which has cleared up the left side (thank goodness) but cutting out dairy stopped the itch and burning I was getting.

My break out was caused by hair extensions. The hair extensions contained latex and other harsh chemicals which made my skin just break out. I have fortunately cleared my scalp, but am left with an unsightly mess on my neck. I won't lie, I am embarrassed. 

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Ho man, that sounds awful! 

Have you tried a nutritionist or something if the like? Tested for allergies/triggers? I found most of the topical creams and ointments to just soothe the itch but not actually help or deter more breakouts and spreading. 

Again, no Doctor here but... I haven't done it yet but B12 injections are supposed to calm out your whole body and skin, or CoQ enzymes supplements- I haven't gone this hardcore as I'm trying to wait until I get older as I thankfully just have patches here and there and I don't find I need a full blown therapy past my diet, vitamin A cream, vitamins orally, pine park, zinc, and knowing my triggers. Sure I always have red spots but they are rarely itchy, weeping or scaley. 

Plus there's that new therapy mentioned in one of my recent blogs you might want to try with your specialist - it's new so it's likely expensive though :( 

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I have tried a nutritionist and had not so much luck with that either. But I did find that cutting out dairy, sugar and meat went a long way with clearing it up on my scalp.

So far I have found that deep fried food, alcohol, perfumed soaps and lotions, wool, sunscreen and certain spices like chilli trigger my skin and leave it scabby and sore.

I don't mind at all if you post what I have had to say on your blog. ️ I have found that using just QV has helped me, no other brand of body wash or lotion has done much for my skin. 

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So there you have it - diet has been an issue across the board for us so that's a good place to start is with a nutritionist and allergist and family doctor.

Thanks for sharing and if anyone wants to write a guest blog please just let me know!

-Adrianna

Flare Ups and crying.

Sometimes I just want to cry. Lately my skin has been so bad that it has spread on the chest and upper back to red angry spots that burn consistently, it's like a sunburn: it itches and aches all at the same time. 

These photos do nothing for how red it is and how much it's taking over my upper body. Most of them are sores rather than the hard chapped version, and very big rather than the small pink dots I'm used to. 

Thankfully it is still off my face (phew) but I'm beginning to worry that it's getting worse. 

More of an archive for how my DWD is behaving - I don't really know what to do. I think it may have something to do with the fact I did a gym class and the poor ventilation in the room made me sweat buckets which always triggers my skin into angry mode - and I have been stressed out about an upcoming project. But really? This is the way it is now? I have to wear my stress on my skin so openly and painfully??! Not. Cool.

I also blame the fact that I can't find a Vitamin A cream that has nothing else in it, my go-to Life Brand is getting harder and harder to find. The Jamiesons one has sugar in it and smelly crap that irritate my skin. Do you have something that is working for you?

I will up my water intake and go back to meditations and double my pine bark and Vitamin B but... I don't want to go on an elimination diet again and I don't want to stop drinking alcohol completely again. Ugh. Just ugh. And sadness. 

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.