Monday, March 14, 2016

I have a tough post to make here.

I recently got an email (thanks for those by they way! Always happy to connect!) that ended with "I just want to feel normal."

I can't help you with that.

What I can do is help you learn from my mistakes and triumphs - but ultimately only you can find your "normal" and I put those in lil quotes because I also don't believe in normal. That word is loaded with baggage so I urge you to find what makes you YOU and you happy.

Y0u can help yourself by seeing your family doctor, then I would highly recommend finding a Natural Path. I had a great experience at Robert Schad Naturopathic Clinic here in Toronto.

Under the recommendations that the above parties give you I also recommend cutting out triggers and allergens like:

-alcohol
-high sugar intake
-cow dairy
-whatever makes your skin (and stomach) crawl when you eat it

I also recommend using gentle and natural products like:

-Perfume free moisturizer (I love the Aveeno line or their knock offs + I live off of Life Brand Vitamin A cream.)
-Perfume free laundry detergent
-Moisture rich shampoo (I'm really liking Rosemary Mint by Aveda) as less crap in your hair = less itchy/scaly skin on my head and neck.
-ditch as much makeup as possible as it only irritates the skin, but if you have to I have been having a good time with Cover FX for hiding bumps and redness.

I also recommend asking about vitamins. I take a women's multivitamin + Pine Bark Extract + B complex + D, and sometimes Zinc + Omegas + Probiotics.

It's a bit overwhelming and I can't say that I have been 100% following my own rules/reco's - but when I do I feel better and have fewer flare ups.

This is not to say I don't have any trace of my Darier's.

I ALWAYS have bumps.
I ALWAYS have redness.


It's just manageable with the above regime.

See?

Stress.
Lady Time.
Parties with all the sugary treats and alcohol.
Sweating really hard at the gym.

All that and more makes for visible/more bumps. That's just life. For me anyway.

So I'm really terribly sorry, my blog isn't doctor approved, nor is it the recipe you have been looking for to make this go away (but if you have it please share with the rest of us!)

 I'm just letting you in on my side of the fight against Darier's - and I hope you take something positive away from it. I hope you share your struggles and wins with me so we can learn from each other.

But other than that?
It just goes on. I wear a lot of scarves. I have a lot of cover ups for the beach. I try to avoid certain foods if I know I'm going to have my picture taken or whatever - and I have had a shift in career to get behind the camera rather than in front of it. It's my way of dealing. But that's just it - my way.

Please share your way of dealing and maybe it will help others too. That's all I'm doing here :)

Thanks for your emails and comments.
I hope we can help each other out.

-Adrianna





4 comments:

  1. I'm 64 and have had Darier's since I was about 3 and a half. Been on every therapy known to science and some not. Dangerous things, weird products(cow urine and mutton tallow), bleach baths, you name it I've tried it, even those tiny fish who nibble off skin. My dermatologist lets me write my own prescriptions and monitor myself on antibiotics, he says I know a lot more about DD than he does. I've tried every diet-don't even ask about the oatmeal with nothing on it three times a day! Laser(full face erbium) kinda worked; but, 5 times in the course of a year? Bit expensive and very painful for the little theraputic results. Whatever you do do NOT get any tattoos with red ink. I don't have any; but, I've seen the results from a red ink job on DD-not pretty-Betty Boop's lips looked like a watermelon after two weeks. So good old Noxzema in the pump bottle after a shower with Dr. Bronner's hemp peppermint soap and doxycyclin 100 mg once a day is keeping me comfy and no major flares. Accutane(I was the guinea pig-1st one to take it for DD) about did me in-lost all my hair, nails and 15 pounds in one week. Eyebrows never did come back-oh, well, I have stark white hair, anyway, so who sees them? Tried the next analog-illegal in the US-had a Dr. friend in Germany who sent it to me, Tegison-just as bad and then Soriatane-equally bad and the list goes on and on, as you know. Good luck sorry to ramble on and on.

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    2. Hi Geri,
      Got your post in an email. So sorry, When I have flares it's usually an infection and I'm on antibiotics for about 10 days. Long tub soaks with warm water and one cup of chlorine bleach help a lot. Good old Benedryl tablets help with itching, they just make you drowsy. New medication from my dermatologist is tacrolimus ointment. Calms everything down and doesn't have any side effects. A lot of the drugs and creams actually make you itch worse.

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  2. Thanks Charlene, I haven't head of that Tacrolimus yet and I'm due to the Dermo in a week so I will bring it up!

    Geri, I'm sorry to hear your husband is in pain. I agree with Charlene that most creams just exacerbate the rash/problem. As you read through my blog you will see I'm a huge fan of the whole/holistic approach meaning inside as well as out.

    Look at diet, get out of the sun and try to keep stressors at bay (actual stress and things that stress the skin like alcohol, sugar, and sweat...)

    I would talk to a naturopath as that worked wonders for me.

    Good luck and please share anything you find.

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