Talking to Zoi

I like community, it helps us understand that we are not alone. I had someone email recently about their Darier's story - I like sharing emails here because not only is it strengthening community - it also is more question and answers we can share with others who have DD. 

Please meet Z: 

hi adrianna,  my name is Z and i too suffer from DD.  right now i am so upset and depressed because i have such a yucky outbreak that i just don't really want to do anything and i'm tired of hearing myself complain.  i have two awesome little boys and lately instead of being able to let go and have fun, i find myself thinking about my DD all the time.  

after the holidays, i am going to find a nutritionist or homeopath like you recommended.  is one better than the other?  i really need to figure out what is adding to my flareups in my diet.  i'm pretty sure dairy is lately.  now i wonder if wheat is.  i don't know where to start because i am overwhelmed with how to do it like you said.

i guess i wanted to ask you what you think i should eliminate first in my diet until i see a specialist.  

any type of retina just makes it worse and itchier.  i get so inflamed that i can't stop itching.

i am also going to try the maritime bark until i see a doctor.  of all the vitamins and supplements, and i see there are a lot of supplements, which ones do you recomment i on my own until i see a specialist.  

i look forward to hearing from you.  thank you.

Hello there,

Sorry for the delayed response - my personal life is in chaos (brother died and boyfriend left) and I don't know what to write to you other than keep trying different things. Read my blog as it has a lot of advice on these topics. I would see a Naturalpath and not a dietitian but that's me - they might work better for you! Dairy is a huge trigger for me as is sugar. The sugary foods dehydrate our already sensitive skin so be careful, the same can be said for alcohol. Talking to a professional will help.

As for the itch take warm (not hot) baths with a cup or two of oatmeal that you have grounded in a coffee grinder or something of the like - there's no need to buy special oatmeal bath pouches from the store - its just ground up oatmeal. It is really good for your skin and takes down inflammation. I like everything Aveeno - their anti itch is good - not great, because its all natural - so its nice but it doesn't numb your skin. 

Hi. Thanks for responding to my email. Sorry to hear about your recent loss. I just lost my grandmother a bit over 2 weeks ago. It was hard. I hope you are doing okay.
I have read your blogs and decided to start my own regiment of vitamins and I think it may be working. I haven't had an outbreak like this since I was diagnosed at 20 and I had to go on accutane. Did wonders but it was extremely drying. With this last outbreak, I was considering it because my entire chest and neck broke out and was itchy and inflamed beyond belief. Since I couldn't see my dermatologist for over 2 weeks, and still haven't, I researched your blogs more in depth along with others and have been doing it for a bit over a week. I think it is working. Although retinA is harsh on my skin and I'm forcing it to tolerate it, I am using it but not everyday. I do plan on seeing a natualpath to help me with dosages b/c I did it on my own. I just want to say THANK YOU for your blogs and the hope you have given me. On a good day, I take a step back and am thankful it's not life threatening, but when I am depressed, u can't help but feel pissed and sorry for yourself.
I was just wondering, how long have u been taking the vitamins and other supplements? Have u ever had a big breakout after being on the vitamins or do they suppress it pretty well. Just wondering and hoping.

I hear that! It's ok to feel frustrated and "pissed" - but not to let the negativity win out because that will lead to more breakouts :P Stress is a huge factor in this disorder I have found. I just posted about how you can make your own calming bath with oatmeal to help with break outs and flare ups. I'm just getting over one - so there is another answer: I do have break outs even though I am taking my supplements and vitamins. Stress can cancel all that out. I take an extra Pine Bark pill on those days and really look at my food intake as sugars and my other triggers will really hurt me on those days when my immunity is low or my body is stressed.

With yoga (stress relief: whatever you can do that makes you happy DO IT! movies, games, a walk, a swim...) and clean food, hydrating lotion, and vitamins I can get it under control in a matter of hours or days depends on how bad the flare up was. I am a woman so I also tend to get mini flare ups on my thighs, neck and sometimes face (where the initial break outs happened) during my "time of the month" as my body is stressed and hormones are everywhere.

Keep a journal. Notice when you have more flare ups - do they happen in a cycle? Is it a time of year (winter time for me = harsh dry season = more break outs!) After a certain food? After visiting a friend with a dog/cat/allergic pet?

I don't have the cure all. I wish I did - I could use the money for the distribution! haha - but with time and patience this can be lessened to a point that it is livable and most people just don't notice mine now.

Best wishes to all - and keep the emails coming!