Winter Flare Ups: Living with Darier's White Disorder in all seasons

Each winter I am reminded why I hate the cold weather: it's dry here in Ontario and I run my humidifier constantly, but it is never enough. My scalp gets flaky and my skin gets flares easier. But this year a NEW thing has happened :( my face is getting dry red patches that itch and have a mix of acne and flare up bumps = NOT FUN.

dry patches are new and I hate them

I am trying to treat it with a mixture of things as I am finding one cream is either too heavy (Vitamin E cream and a new one I tried from LUSH called Celestial) and takes away the redness/dry spot but leaves pimples, or it dries out the pimples and soothes the dry skin but leaves flaky dry skin (Vitamin A cream, Polysporin, and the Germolene).

UPDATE: Celestial didn't work out, it was too heavy and left me breaking out** I ended up using it as a hand cream.

I hate winter.
(And yet I prefer it to summer? Ugh, scratch that, I just hate my stupid skin.)

Granted I'm also highly stressed lately and have been consuming more sugar than normal... I need to focus on getting back into a routine of meditation and low/no sugar intake as my back has sprouted red "wings" and the front of my torso is sporting red blotches here and there. I am feeling very defeated.

I have been going to the gym somewhat regularly so sweating and friction of the workout clothes might also be contributing, and they have a hot tub there which is chlorinated so that could be helping or hindering me as well; I have heard that chlorine helps some of us with DWD and people go swimming in pools to help keep flares down.

I am going to go back to 2x 100 mg magnesium a day - one in the morning and one before bed to see if that helps, on top of my regular Vitamin B + Pine Bark Extract mix in the morning. It could be time to mix in Vitamin D (cloudy winters are not making this fun either).

So just a reminder that it's not always the same thing day in and out that works - sometimes you have to bang your head against the metaphoric wall and try to tap into what's making the flare and fix it on the fly.

Happy winter everyone :/

IT WORKS! An Update on how it's going

Update: all the changes and tweaks and ongoing therapy is working itself out! I'm not "cured" or anything but it is a helluva lot better than a few months ago when I had to hide under scarves and cry from the pain...

Right now this is what it looks like:

 

Not too shabby! Of course the pink bumps are never going to be completely gone (or never say never? *hopeful*) but this is so much better than the red rash and open weeping sores I had this winter.

SO! What is my line-up of therapy and goods to bring my DWD under control? I'm so glad you asked:

-no cow dairy
-the least amount of sugar
-lots of water
*I do drink coffee, tea, and drink cider and wine but always in moderation/occasionally






Daily
-50 mg Pine Bark Extract pill
-Vitamin B (either B2 100 mg or a B100 complex) pill
-15 mg zinc pill
-100 mg magnesium (doctor said it will help with my headaches)
-lavender pillow mist + frankincense/lavender oil mix on pulse points (great for anxiety and to sleep)
-meditation 5 mins (needing to get this up to 10 in 6 months)
-Vitamin A 10000 IU pill (at night)
-Vitamin A cream (on affected area at night)
-SPF 15 or higher (depending on season and outdoor activity but ALWAYS at least 15)

Sometimes
-Multivitamin
-Vitamin D (on cloudy/stay inside days)
-probiotics
-CBD pills for anxiety; situational
-Germolene for spot treatment (when the pink bumps become redder)

So there ya go! That's what I'm doing, remember to talk to your dermo and/or doctor or health care professional when trying new things - and on that note what is working for you?

I haven't had to use Germolene in over a week! And I am glad of it, this stuff is potent and shouldn't be used daily.

I am drinking soy milk instead of any other dairy alternative so I can try and keep my hormone levels up too, at least that's the idea - I don't know if it's helping at all but tofu and soy milk are a part of my diet since I left birth control for an IUD.

I hope this helps you on your journey to wellness!

A video update! Things are improving with these three things...

So the past few months have been trying to say the least, and everything translates to my skin - you know that saying wearing your heart on your sleeve? Well I wear my "heart" aka stress on my neck, as that's where my Darier's manifests the most.

So I tried:

Bio Oil = fail.

Recovery Balm from Saje = fail.

So next I went back to what I know: lower sugar, no dairy, less stress (isn't that always the goal??) and of course the tried and tested supplements. I went back to taking Vitamin A gels at night, Zinc 15 ml at lunch, and ok, I admit, something new....

I vlogged about it! Check it out:

I ordered Germolene on Amazon: 

https://www.amazon.ca/gp/product/B008D0MLGA/ref=oh_aui_detailpage_o00_s00?ie=UTF8&psc=1

The Darier's White Disorder Facebook Group! https://www.facebook.com/groups/21860644983/ 

This is the worst.

Seriously. This is the worst my Darier's has been since back in my 20s when I didn't know what it was. It is sore, weepy, itchy, and this is better than last week - granted I needed to let my skin calm down after me trying to put everything on it (TL;DR Bio Oil will mess you UP!)

The pictures can't really capture how red/scaly/irritated/ it is (thanks iphone camera and my lame photography skills) and it's spreading past my usual areas to upper neck and my back... I haven't been this concerned in a while. Yes, I know it's only been 2 months since I went on the IUD and I hear that changing your hormones can affect your Darier's and I have always believed that - I mean, come once a month my "lady time" makes my skin flare up to the point of tears. Now it's at that as base level and it's driving me crazy....

So I'm doubling up on Vitamin A topically and orally in pill form. I'm even splitting the gel cap of the 10000 IU and putting it on the saddest part on my right shoulder/neck. Not applying cover up and letting it breath, lots of scarves and turtlenecks... I am going to talk to my doctor about hormone therapy to see if I can settle this down with more estrogen or progestin, as the low dose from switching t an IUD is the ONLY thing that has changed - I still eat the same, drink the same, and my supplements haven't changed. So that's gotta be it. 

I don't know if I can ride out my natural body chemistry - my friend said it took her body about 6 months to adjust to the IUD after doing pills for most of her life and that's the same boat as me. But, she didn't have her skin reflect her inner chemical circus! 

Gah. This is the worst. 

What Works vs What Doesn't

What Works vs. What Doesn't  (...for me anyways)

So I saw Bio Oil on sale at Shoppers Drugmart and decided this was the say I try it. It was hyped a few years ago as "the thing" for skin ailments such as scars, stretch marks and dark spots and some skin issues.

BAD IDEA

I have never felt my skin on fire or itchy as much as I have on Bio Oil

I took pictures of how it got worse and worse but instead of posting that, which isn't helpful, I decided to do a round up of what IS WORKING for me..



I also have fallen in love with my oil diffuser and essential oil therapy... I have been chatting with a friend who does oil mixology and the top skin soothers are frankincense and lavender. I have those oils 7 drops each in coconut oil applied by a roller vial like this:

So far it's not making it worse nor making it better but I like the way it makes me smell and feel so I will keep on trying it on my pulse points and behind my ears instead of perfumes.

So there's my overview, combine the above with low sugar intake, no dairy, low red meat, low/no cured meats. I do eat gluten and I do like wine and cider every now and then, but no beer, when considering my diet with all the above.

And I have to mention that I am on a low hormone IUD for the first time in my life and it is making my skin FREAK OUT so that is why I am trying all these things because I'm impatient and want a fix NOW instead of waiting out the hormonal flux that is happening now that I am off birth control and with that the regular hormones that came with it from the pill...

I also joined a group on facebook!  Maybe it's for you too? They talk a lot about the medical side of Darier's which I soon might have to look into as I age and deal with a loss of supplementary hormones.

Tell me what is working for you!

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?

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.

Natural Face Scrubs

I am sick of buying tiny tubes for a ba-jillion dollars only to have my sensitive skin hate me for doing so in the long run. For a while I was making do with Neutragena Face Scrub for sensitive skin - but it wasn't exactly helping, but it wasn't exactly making me break out so I was okay with using it. Once it ran out last week I made a vow to start trying some of the DIY face scrubs I keep seeing on Pinterest (follow me if you like!)

So I tried the olive oil + sugar (at the bottom of that info-graphic) scrub and it left me very sad... The olive oil is so thick and unforgiving that it was clogging my pores instantly. It's supposed to be nurturing and make you silky smooth! Not for me! I broke out on my nose and cheek bones after that for days! NEVER AGAIN!

Next I wanted to try something without oil in it. I came upon this website: http://voices.yahoo.com/homemade-coffee-face-mask-scrub-8051090.html 

It had just coffee grinds and honey as the ingredients. Well well well - I just happen to have that in my pantry every day! Like it says on the website: if you drink coffee in the morning, you then have the perfect grinds to use for a scrub! I cheated as I only had a bit of grinds in my french press (and the espresso grind was a good bet so its not too big and coarse for your skin) and so I may have cheated a bit on the ratio but the results were still fab...

The scrub on ma face

After the scrub: a lil pink is okay!

     

The coffee grounds and honey
A lil wet but it made no difference and the Vitamin A post-scrub cream (top)

I used 1 tbsp of unpasteurized honey  + left overs from one cup of coffee espresso grind  ----->
(**note - they were German Chocolate Cake Dark Roast and left my skin smelling like CAKE! LOVE!)

I rubbed for a minute or two then left it on for another 5 minutes (the website says leave it up to 15 minutes but I'm always wary of length due to sensitivity...)

Then splash it away, dab the water, and MAN did it feel GLORIOUS! 
Then I added my Vitamin A cream all over my face and neck after.

My face feels so GOOD. It doesn't feel ouchy or burnt or gross (like with the olive oil) 
Now to see if I break out over the next few days...

Anything working for you?

I want to try oatmeal and coconut oil in some sort of scrub - I hear both are very good for our sensitive skin!

**note post-posting this: talking to a friend and she swears by coffee scrubs. She says she can keep her scrub a week (no refrigeration required) if it's kept in an airtight container (ziplock or jar) for about a week. But I like the idea of making it on demand. A lil FYI for your DIY ;)

2018 UPDATE: I have been using JUST used coffee grinds, no honey or oil, just the grinds every time I have a shower (ies easier to get it off my face and not all over the bathroom that way) I found the added oil or honey was just too much for my skin. I keep my used coffee grinds in a tiny mason jar sealed tight on my shower caddy between uses. Works like a charm! And yes, German Chocolate Cake is still my favourite :)

A little (cheap) piece of heaven

I recently got an email from a reader asking how things are going -

The short answer is good!

The long answer is...

My boyfriend started using my face/body cleanse schtuff and I started to get mad. But, in due turn, he "bought the next round" but couldn't find the Vitamin A cream I had bought from the local health food store (from my last post http://fightagainstdariersdisease.blogspot.ca/2012/12/vitamin-creams.html) What he brought home was this:

Life Brand Vitamin A and Life Brand Vitamin E

The Vitamin E stuff is THICK and doesn't really do it for me. - But the Vitamin A cream? I could MARRY IT. No scent. No thickness. Easily my favourite new thing to add to my MUST have list for my skin disorder. After a few days my face cleared of redness. After a week - I didn't wear foundation. Me. NOT WEARING FOUNDATION. Guys. Girls. World. Hear me: this is my new favourite thing! If you don't see it at your local store - inquire. Or buy online?

I mean LOOK: - this is me with just eye make up and some sunscreen (because that's how I have to roll)

So my neck and face are truly thankful. I hope you have been testing and trying new things too - if so - share please! 

All the best to you and yours,

Adrianna

Vitamin A creams

Having a flare up this month - I think it's because (sorry gentlemen but) I'm starting new birth control pills and my hormones are everywhere. Plus I'm stressing about work, and not watching my sugar intake. Or it could just be that I'm getting older and my skin is not as resilient as it used to be. 

I went to see my useless dermatologist who asked ME what was working. Huh. 

The only thing he said that was useful was about Vitamin A - I forgot it is one of the top vitamins in skin rejuvenation. So I passed on the hundred dollar cream and went and got that cream you see above at the health food store for 9.99$ So far so good. The only thing is, it has "fragrance" - which could mean an irritant. But so far that hasn't been a bother to my skin. It actually smells nice! But it is very light - made for wrinkles apparently - so it absorbs fast and I usually like heavier creams like the Lifebrand vitamin E cream. 

Anything working for you?