Showing posts with label inflammation. Show all posts
Showing posts with label inflammation. Show all posts

Thursday, 20 August 2026

 2026 Update: The moment I have been dreading... Buckle up. It's a long one. 

*meds and action plan at the bottom for those who want to skip the storytime


This update is for my DWD girlies, because our hormonal changes make for constant navigation of flares that I have found only birth control, mindfulness, and skin elasticity focused supplements can help with.

That all got thrown out the window after nearly 20 years managing my DWD with all the above.

I hit perimenopause in June 2026. I had two irregular periods and went from this:


To this

I haven't had a flare like this in 20 years, back when I was first going through diagnosis in my 20's. I was beyond horrified, Germolene and Pine Bark and all the mindfulness wasn't doing anything to stop it. 

I went to see my family doctor who listened to me and heard I suspected my irregular periods were to blame - I was told in my 20's by that random angel of a nurse that when I hit my 40's my skin would change, what she didn't mentioned is that perimenopause would say "hold my beer" and double down on how awful it was to be. 

My doctor listened and asked if I wanted to see a menopause specialist - yes! Definitely! Ok see her in two weeks. And then she heard that I wanted more meds to control the pain and spread - so I needed to see a dermatologist, so she sent me to one that did clinical trials and more cutting edge stuff. I was relieved to have an action plan. Until then I was covering up with scarves IN THE SUMMER but I made it fashion: 
Bathing suit with scarf = vampire anime style?!?!



The DWD got worse, it was weeping, breaking, bleeding, and the day I saw the dermatologist I was migraining (likely from all the stress of this) and super depressed. I was hoping to discuss photodynamic therapy but quickly found I was not in a safe environment to discuss my DWD...

I was sent to clinical dermatologist Dr. Geeta Yadav, MD who was absolutely horrible.  Not only did she ignore my migraine (I told her I was migraining but she insisted on shouting at me and keeping the lights on full while we talked) but she also wouldn't listen to my hormones theory citing "I only treat the skin"

Baby. The skin is our largest organ and it literally holds us together - of course it's connected and influenced by a number of things. 

She gave me topical retinoids Arazlo: Tazarotene lotion 0.045% to put on the affected area, also saying I was "lucky" because women "my age" are begging for this to help with their wrinkles. 

Yes. That's why I'm here, I'm SO LUCKY to have a rare genetic skin disorder that my skin just cracks, bleeds, makes plaques, and feels/looks like a sun burn with itchy poison ivy on it... I'm clearly here for my crows feet 🙄 Then she said SEE YOU IN 4 MONTHS. Lady. I am actively bleeding and you don't want to see me for a SEASON?! 

I hated this whole experience. I cried in the car. I cried on the way home. I cried myself to sleep. 

But I did learn something from her - she mentioned a Scott Walsh at Sunnybrook Hospital that was a kind of specialist (unofficial) on Darier's!!! So I asked my doctor to set me up with him and thankfully it was only a month long wait. During that time I was using the topical retinoids which burned and peeled my skin, making it worse and it spread all along my chest, and some on my right torso...

I cried a lot. 

I saw the menopause specialist (unofficial just really knowledgable) and she said that it could be that the IUD's progesterone has helped regulate my hormones, and that yes this could be two irregular periods but we can't know for sure with the IUD in. We talked about hormone replacement should I opt to take out the IUD to understand my perimenopause and that might in turn help my DWD... But that means lots of changes like taking out the IUD. 

SO MANY DECISIONS. Not enough solid answers.

My birthday gifts were scarves, and I started to normalize my covering up with an OOTD type post hyping my "scarf game" and one of my posts inspired an artist friend of mine to draw me and I cried to see such a bold and confident cartoon of me - because I felt the exact opposite. Constant pain. Constant management. I was drained and it had only been two months. 



August 18th and I finally saw the specialist at the hospital, but not Scott Walsh, his assistant resident Dr Bridgman, who was exactly whom I have been waiting for these past 20 years!

She listened.
She validated.
She was warmly curious and empathetic. 
She made an action plan for me that made me - yes - cry - but this time out of relief. 

The action plan


She agreed that Darier's is VERY influenced by hormones. So ladies, look to your cycle management; I was on birth control pills until I was 35 and then moved to Mirena (the dip IUD) which has greatly helped keep my DWD in check for the past two decades. But with me coming to the end of the 5 year efficacy for the IUD no wonder I had breakthrough bleeding/irregular period. Dr Bridgman asked if I wanted to go back on birth control or start a new IUD cycle if that's what's working.

Dr Bridgman wanted to get my pain under control so she prescribed a steroid cream Taro-Mometasone Cream (Mometasone Furoate USP 0.1% w/w) and to stop immediately the topical retinoid. She guaranteed I would feel less pain and have less irritation in 48 hours. I wept. For real. 
"Wow, the bar is really low with you huh?"
"You have no idea the 20+ years of no one having answer, no one caring to listen..."

Since topical retinoid is really harsh and acts an an irritant ("Why did she give you this?!" Dr Bridgman asked me) she prescribed oral retinoids, low dose to start, epuris isotretinoin capsules 10 mg

And then she recommended I carry a hypochlorous acid spray for when my skin bothered me and I wasn't home, and it would be too much to break out Germolene or to not rub something in to irritate it further - this spray is supposed to help with irritated skin, and for me she suggested a locally made one from E11ement which says 
  • Gentle on Skin: Safe for all skin types, including sensitive and acne-prone skin.
  • Natural and Effective: A powerful yet natural disinfectant that helps maintain skin health.
  • Multi-Purpose: Use it to cleanse, hydrate, and protect your skin.


I tried it and smells like chlorine from a pool... It didn't burn? It didn't relieve like Germolene but it did feel good? I'll keep a small bottle on me and report back after a few uses but the idea sounds great. 


Now it's been 2 days and I have done the cream twice a day, and the pill once already - the cream is a DREAM I went down in redness and pain point IMMEDIATELY. Itchiness went down too. The pill is really low dose but it is supposed to cause dryness, like so much dryness that my lips and eyes could dry out too. Lots of moisturizer is needed. 

Before Taro-Mometasone Cream (Mometasone Furoate USP 0.1% w/w)



After. Noticeably less red irritation after ONE application!!! 
(white shirt was day time clothing, black shirt was my PJs haha)



In fact I started making my own beeswax balm by adding beeswax, olive oil infused with calendula and coconut oil infused with plantain (not the banana!) and yarrow. This is really hydrating for me and doesn't burn, and doesn't dry out like most moisturizers. I'm experimenting with what hydrates the most and is also calming. 


Next steps:

-I'm going to stick with this regime for 5 weeks until I see Dr Bridgman again in September.

-I'm going to relay this to the menopause specialist and see what my migraines will allow for (birth control and hormone treatments are hard to navigate with migraine history...) and likely take out my IUD to see what happens (is this a dumb idea I don't know! But then I can either get a new more potent IUD or go back on oral contraceptions.)

-I'm doubling down on my sun protection as the oral retinoids mean I'm all more sensitive to the sun not just my neck area (nothing new I have hats and scarves and SPF 60)

-And I will keep up with skin support like Pine Bark, Zinc (Dr Bridgman loved to hear I was taking Zinc so I want to make more of that as a habit), magnesium L-Threonate a+ BisGlysinate, CoQ Enzymes, Vit D + B, Omega/Fish Oil. 


Wish me goodluck. 




















 2026 Update: The moment I have been dreading... Buckle up. It's a long one. 

*meds and action plan at the bottom for those who want to skip the storytime


This update is for my DWD girlies, because our hormonal changes make for constant navigation of flares that I have found only birth control, mindfulness, and skin elasticity focused supplements can help with.

That all got thrown out the window after nearly 20 years managing my DWD with all the above.

I hit perimenopause in June 2026. I had two irregular periods and went from this:


To this

I haven't had a flare like this in 20 years, back when I was first going through diagnosis in my 20's. I was beyond horrified, Germolene and Pine Bark and all the mindfulness wasn't doing anything to stop it. 

I went to see my family doctor who listened to me and heard I suspected my irregular periods were to blame - I was told in my 20's by that random angel of a nurse that when I hit my 40's my skin would change, what she didn't mentioned is that perimenopause would say "hold my beer" and double down on how awful it was to be. 

My doctor listened and asked if I wanted to see a menopause specialist - yes! Definitely! Ok see her in two weeks. And then she heard that I wanted more meds to control the pain and spread - so I needed to see a dermatologist, so she sent me to one that did clinical trials and more cutting edge stuff. I was relieved to have an action plan. Until then I was covering up with scarves IN THE SUMMER but I made it fashion: 
Bathing suit with scarf = vampire anime style?!?!



The DWD got worse, it was weeping, breaking, bleeding, and the day I saw the dermatologist I was migraining (likely from all the stress of this) and super depressed. I was hoping to discuss photodynamic therapy but quickly found I was not in a safe environment to discuss my DWD...

I was sent to clinical dermatologist Dr. Geeta Yadav, MD who was absolutely horrible.  Not only did she ignore my migraine (I told her I was migraining but she insisted on shouting at me and keeping the lights on full while we talked) but she also wouldn't listen to my hormones theory citing "I only treat the skin"

Baby. The skin is our largest organ and it literally holds us together - of course it's connected and influenced by a number of things. 

She gave me topical retinoids Arazlo: Tazarotene lotion 0.045% to put on the affected area, also saying I was "lucky" because women "my age" are begging for this to help with their wrinkles. 

Yes. That's why I'm here, I'm SO LUCKY to have a rare genetic skin disorder that my skin just cracks, bleeds, makes plaques, and feels/looks like a sun burn with itchy poison ivy on it... I'm clearly here for my crows feet 🙄 Then she said SEE YOU IN 4 MONTHS. Lady. I am actively bleeding and you don't want to see me for a SEASON?! 

I hated this whole experience. I cried in the car. I cried on the way home. I cried myself to sleep. 

But I did learn something from her - she mentioned a Scott Walsh at Sunnybrook Hospital that was a kind of specialist (unofficial) on Darier's!!! So I asked my doctor to set me up with him and thankfully it was only a month long wait. During that time I was using the topical retinoids which burned and peeled my skin, making it worse and it spread all along my chest, and some on my right torso...

I cried a lot. 

I saw the menopause specialist (unofficial just really knowledgable) and she said that it could be that the IUD's progesterone has helped regulate my hormones, and that yes this could be two irregular periods but we can't know for sure with the IUD in. We talked about hormone replacement should I opt to take out the IUD to understand my perimenopause and that might in turn help my DWD... But that means lots of changes like taking out the IUD. 

SO MANY DECISIONS. Not enough solid answers.

My birthday gifts were scarves, and I started to normalize my covering up with an OOTD type post hyping my "scarf game" and one of my posts inspired an artist friend of mine to draw me and I cried to see such a bold and confident cartoon of me - because I felt the exact opposite. Constant pain. Constant management. I was drained and it had only been two months. 



August 18th and I finally saw the specialist at the hospital, but not Scott Walsh, his assistant resident Dr Bridgman, who was exactly whom I have been waiting for these past 20 years!

She listened.
She validated.
She was warmly curious and empathetic. 
She made an action plan for me that made me - yes - cry - but this time out of relief. 

The action plan


She agreed that Darier's is VERY influenced by hormones. So ladies, look to your cycle management; I was on birth control pills until I was 35 and then moved to Mirena (the dip IUD) which has greatly helped keep my DWD in check for the past two decades. But with me coming to the end of the 5 year efficacy for the IUD no wonder I had breakthrough bleeding/irregular period. Dr Bridgman asked if I wanted to go back on birth control or start a new IUD cycle if that's what's working.

Dr Bridgman wanted to get my pain under control so she prescribed a steroid cream Taro-Mometasone Cream (Mometasone Furoate USP 0.1% w/w) and to stop immediately the topical retinoid. She guaranteed I would feel less pain and have less irritation in 48 hours. I wept. For real. 
"Wow, the bar is really low with you huh?"
"You have no idea the 20+ years of no one having answer, no one caring to listen..."

Since topical retinoid is really harsh and acts an an irritant ("Why did she give you this?!" Dr Bridgman asked me) she prescribed oral retinoids, low dose to start, epuris isotretinoin capsules 10 mg

And then she recommended I carry a hypochlorous acid spray for when my skin bothered me and I wasn't home, and it would be too much to break out Germolene or to not rub something in to irritate it further - this spray is supposed to help with irritated skin, and for me she suggested a locally made one from E11ement which says 
  • Gentle on Skin: Safe for all skin types, including sensitive and acne-prone skin.
  • Natural and Effective: A powerful yet natural disinfectant that helps maintain skin health.
  • Multi-Purpose: Use it to cleanse, hydrate, and protect your skin.


I tried it and smells like chlorine from a pool... It didn't burn? It didn't relieve like Germolene but it did feel good? I'll keep a small bottle on me and report back after a few uses but the idea sounds great. 


Now it's been 2 days and I have done the cream twice a day, and the pill once already - the cream is a DREAM I went down in redness and pain point IMMEDIATELY. Itchiness went down too. The pill is really low dose but it is supposed to cause dryness, like so much dryness that my lips and eyes could dry out too. Lots of moisturizer is needed. 

Before Taro-Mometasone Cream (Mometasone Furoate USP 0.1% w/w)



After. Noticeably less red irritation after ONE application!!! 
(white shirt was day time clothing, black shirt was my PJs haha)



In fact I started making my own beeswax balm by adding beeswax, olive oil infused with calendula and coconut oil infused with plantain (not the banana!) and yarrow. This is really hydrating for me and doesn't burn, and doesn't dry out like most moisturizers. I'm experimenting with what hydrates the most and is also calming. 


Next steps:

-I'm going to stick with this regime for 5 weeks until I see Dr Bridgman again in September.

-I'm going to relay this to the menopause specialist and see what my migraines will allow for (birth control and hormone treatments are hard to navigate with migraine history...) and likely take out my IUD to see what happens (is this a dumb idea I don't know! But then I can either get a new more potent IUD or go back on oral contraceptions.)

-I'm doubling down on my sun protection as the oral retinoids mean I'm all more sensitive to the sun not just my neck area (nothing new I have hats and scarves and SPF 60)

-And I will keep up with skin support like Pine Bark, Zinc (Dr Bridgman loved to hear I was taking Zinc so I want to make more of that as a habit), magnesium L-Threonate a+ BisGlysinate, CoQ Enzymes, Vit D + B, Omega/Fish Oil. 


Wish me goodluck. 




















Tuesday, 19 February 2019

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 :/


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 :/


Sunday, 23 September 2018



Image source: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6134490/


Posted in the Darier's White Disorder group on Facebook was an article from a naturopathic doctor, and then a comment from someone who has used Magnesium orally to help combat the symptoms of Hailey Hailey disease which is similar but different to Darier's White Disorder. Here have a look: https://en.wikipedia.org/wiki/Hailey%E2%80%93Hailey_disease


Here's the article👉: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6134490/ 

What I found interesting: "therapeutic regime of oral magnesium (300 mg/day)... In June 2017, a trial of oral magnesium chloride 300 mg per day was started. Within 1 month, significant improvement was seen in lesions" 

I take 100 mg/day as recommended by my family doctor - I'm starting to increase my dose (but slowly as there is a laxative side effect to consider! From 100 mg to 200 mg a day (one pill in the morning and one before bed. What a happy accident to have the Magnesium prescribed to me for my headaches, meanwhile its been possibly helping my skin disorder!


Here's what someone said in the group as a comment and I found really helpful: 


"I have been intimately involved with this protocol for people with closely related Hailey Hailey disease since the original Borghi case study in 2014. At this point, several thousand people with HHD follow this protocol, most with considerable success.

It does not stop outbreaks, but it does limit their frequency, size and greatly speeds healing.

Several things have been found through testing to be important that were not uncovered in the original case study.

The first is that the dose of magnesium that appears to work best is 6 mg/kg of body weight when you have an active outbreak reduced to 4.5 mg/kg when there is no outbreak to maintain the protective effect.

Dosing based on weight rather than the standard approach which is based on age and sex is much more effective. Although based on weight, the dosing is roughly equivalent to 100% of the Recommended Daily Intake for magnesium at the full 6 mg/kg dose.

The other difference that was found to be important compared with the original case study is that this works best when you maintain vitamin D in a range of 40-60 ng/ml (100-150 nmol/L). To maintain the higher end of this range requires a daily dose of vitamin D of roughly 7,000 IU/day. While this range and dosing is considerably higher than that recommended by the national standards organizations, it is perfectly safe as long as you have normal kidney function. Although 4,000 IU/day is the official Upper Safety Limit, the same standards body set 10,000 IU/day as the No Observed Adverse Effect Level (NOAEL). Another way of looking at the safety of this dosing is that the body will produce between 20,000-30,000 IU of vitamin D from sun exposure.

A number of people have added Vitamin C to this regime although there are no studies, formal or informal showing that this makes a difference in Hailey Hailey.

The original case study was based on the use of magnesium chloride, but there has been extensive informal testing of other forms of magnesium and all with the exception of magnesium oxide and hydroxide seem to work equally well.

Some people are very sensitive to the laxative effects of magnesium, but there are several simple steps that minimize them. The first is to switch to an amino acid chelate of magnesium such as lysinate, glycinate and so on. The second is to split the dose in two and take half in the morning, half at night. It also helps to drink an extra glass of water when you take the magnesium effectively lowering the concentration and thereby laxative effect.

Happy to help anyone interested in adopting this regime. Given the success for Hailey Hailey, there is every reason to think it will be useful for Darier's"



Are you using Magnesium too?



Image source: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6134490/


Posted in the Darier's White Disorder group on Facebook was an article from a naturopathic doctor, and then a comment from someone who has used Magnesium orally to help combat the symptoms of Hailey Hailey disease which is similar but different to Darier's White Disorder. Here have a look: https://en.wikipedia.org/wiki/Hailey%E2%80%93Hailey_disease


Here's the article👉: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6134490/ 

What I found interesting: "therapeutic regime of oral magnesium (300 mg/day)... In June 2017, a trial of oral magnesium chloride 300 mg per day was started. Within 1 month, significant improvement was seen in lesions" 

I take 100 mg/day as recommended by my family doctor - I'm starting to increase my dose (but slowly as there is a laxative side effect to consider! From 100 mg to 200 mg a day (one pill in the morning and one before bed. What a happy accident to have the Magnesium prescribed to me for my headaches, meanwhile its been possibly helping my skin disorder!


Here's what someone said in the group as a comment and I found really helpful: 


"I have been intimately involved with this protocol for people with closely related Hailey Hailey disease since the original Borghi case study in 2014. At this point, several thousand people with HHD follow this protocol, most with considerable success.

It does not stop outbreaks, but it does limit their frequency, size and greatly speeds healing.

Several things have been found through testing to be important that were not uncovered in the original case study.

The first is that the dose of magnesium that appears to work best is 6 mg/kg of body weight when you have an active outbreak reduced to 4.5 mg/kg when there is no outbreak to maintain the protective effect.

Dosing based on weight rather than the standard approach which is based on age and sex is much more effective. Although based on weight, the dosing is roughly equivalent to 100% of the Recommended Daily Intake for magnesium at the full 6 mg/kg dose.

The other difference that was found to be important compared with the original case study is that this works best when you maintain vitamin D in a range of 40-60 ng/ml (100-150 nmol/L). To maintain the higher end of this range requires a daily dose of vitamin D of roughly 7,000 IU/day. While this range and dosing is considerably higher than that recommended by the national standards organizations, it is perfectly safe as long as you have normal kidney function. Although 4,000 IU/day is the official Upper Safety Limit, the same standards body set 10,000 IU/day as the No Observed Adverse Effect Level (NOAEL). Another way of looking at the safety of this dosing is that the body will produce between 20,000-30,000 IU of vitamin D from sun exposure.

A number of people have added Vitamin C to this regime although there are no studies, formal or informal showing that this makes a difference in Hailey Hailey.

The original case study was based on the use of magnesium chloride, but there has been extensive informal testing of other forms of magnesium and all with the exception of magnesium oxide and hydroxide seem to work equally well.

Some people are very sensitive to the laxative effects of magnesium, but there are several simple steps that minimize them. The first is to switch to an amino acid chelate of magnesium such as lysinate, glycinate and so on. The second is to split the dose in two and take half in the morning, half at night. It also helps to drink an extra glass of water when you take the magnesium effectively lowering the concentration and thereby laxative effect.

Happy to help anyone interested in adopting this regime. Given the success for Hailey Hailey, there is every reason to think it will be useful for Darier's"



Are you using Magnesium too?

Wednesday, 14 February 2018



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. 



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. 

Friday, 29 December 2017

I have some sad news, my experiment did not go well with my last post about the Saje Restoral Skin Ointment  it didn't work for me, I tried it for a week, applying in the morning and at night. Here is the day by day:

Day 1


Day 2


Day 3



Day 4


Day 5


...and then I stopped. My skin was getting sore and irritated and hurt. So I stopped and called this a failed experiment. I couldn't make it to day six :(

I went right back to Vitamin A Cream and BOOM it was better in a few days with my pink dots rather than blistered sores like you see above.

I'm sad that it didn't help; at first it felt like it was drying out the affected area but it was really just irritating it and making them open up and be sore and weepy, which made me sore and weepy.

You never know, it may work for you but for me it just seemed to make it worse.

What creams and dietary goods are you trying? Anything new?

I have some sad news, my experiment did not go well with my last post about the Saje Restoral Skin Ointment  it didn't work for me, I tried it for a week, applying in the morning and at night. Here is the day by day:

Day 1


Day 2


Day 3



Day 4


Day 5


...and then I stopped. My skin was getting sore and irritated and hurt. So I stopped and called this a failed experiment. I couldn't make it to day six :(

I went right back to Vitamin A Cream and BOOM it was better in a few days with my pink dots rather than blistered sores like you see above.

I'm sad that it didn't help; at first it felt like it was drying out the affected area but it was really just irritating it and making them open up and be sore and weepy, which made me sore and weepy.

You never know, it may work for you but for me it just seemed to make it worse.

What creams and dietary goods are you trying? Anything new?

Monday, 14 March 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





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





Wednesday, 4 March 2015

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?

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?

Thursday, 22 January 2015

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. 



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. 



Sunday, 9 January 2011

I have had some fierce break outs over the holidays. I have had a tragedy befall my family, my boyfriend of 3+ years and I are splitting, I have to move and my mom is getting a divorce. Horray life!  So lots of stress plus holiday treats plus holiday drinking... ya my back blew up.

I looked up about making your own oatmeal bath - seeing as the mainstay ingredient in my Aveeno products is usually oatmeal to calm the skin. Guess what? It's SUPER EASY:

http://babyparenting.about.com/cs/healthissues/a/oatmealbath.htm

http://www.solveyourproblem.com/natural-health/colloidal_oatmeal_remedies.shtml

I love baths - but do your research: too hot can damage our sensitive skin so warm baths are best! These links were helpful and a good start to reading up on how a simple food can help change your skin :)

I have had some fierce break outs over the holidays. I have had a tragedy befall my family, my boyfriend of 3+ years and I are splitting, I have to move and my mom is getting a divorce. Horray life!  So lots of stress plus holiday treats plus holiday drinking... ya my back blew up.

I looked up about making your own oatmeal bath - seeing as the mainstay ingredient in my Aveeno products is usually oatmeal to calm the skin. Guess what? It's SUPER EASY:

http://babyparenting.about.com/cs/healthissues/a/oatmealbath.htm

http://www.solveyourproblem.com/natural-health/colloidal_oatmeal_remedies.shtml

I love baths - but do your research: too hot can damage our sensitive skin so warm baths are best! These links were helpful and a good start to reading up on how a simple food can help change your skin :)

Tuesday, 5 October 2010

More emails from great people from around the world who also have DD - our thoughts over email shared for your interest:


Hi Adrianna!My name is Tsvetelina, Eastern Europe.I was diagnosed with Darier's disease 10 years ago,now I'm 29.When I was searching on the web for new information and treatment of DD, I  found the site www.skinpatientsalliance.ca and your postings.As I also have the disease, I think and hope that we can exchange information about therapies and treatment of DD and help each other.
Like you, I've seen a lot of dermatologists,most didn't know about DD or know a few.After being diagnosed with DD, I hardly wanted that biopsy was wrong.I even took second biopsy,still the same - Darier's disease.So I had to admit I should live with it and find a treatment wich will work for me.That isn't easy,as you know that for now,there's no total cure of DD, only supporting treatment unfortunately.
With the years I have outbreaks more often,especially when I have my period.I've been taking oral retinoids - Neotigason,but only for 2-3 months because it caused me hard loss of hair.I also used topical retinoids -Retin A,Adapalene also known as Differin ( I still use it,it gives me good results) and others.I also use corticosteroids as cream - Fucicort ,wich also contains antibiotics,and I also have been on injections with corticosteroids,didn't help a lot.I have had procedures of chemical peeling,that also didn't help me a lot.As I didn't find the "right therapy",  I keep searching .And I try to stay positive and believe that somehow things will be better.
I also take vitamins and supplements but not regularly.From 2 weeks I'm taking 4 Life Transfer Factor Plus( www.4life.com) and I expect a good result.As I learn in your blog about your Hypoallergic diet ,I'm interested in what exactly it consist(I never made a diet for DD).Also about the vitamins and supplements you're taking,in what doses,and for what periods of time?Now I'm also thinking on the possibility for a surgery with Yag Laser,I read articles that it works on DD and even a complete remission can be achieved.
Hope you'll write me back and we can give a hand on our common problem - Darier's disease.
Best regards,
Tsvetelina
-------------------------------


Hello!
Good to meet you - and I'm sorry that you too have DD. I have posted my dosages on the website but tend to stay away from much detail because I am not a doctor nor a health practitioner - take the vitamins and suupliments to your natural path or health practitioner to get the dosage that is right for your body. Right now I take Vit B1,6,12 complex, Zinc/copper, Vitamin D, A, sometimes C, omegas on occasion when I haven't had fish in that day, probiotics, maritime PINE BARK! is my saviour. It is my miracle pill.  Look into it - I couldn't live without it!
I'm having troubles seeing all my posts on skinpatientalliace and have called them recently to figure it out - I'm thinking most of my dosage entries are there.  I hope they will figure it out with me soon!
I haven't tried most of the medication you have listed - the side effects scared me off too quickly and so did the prices! The hypoallergenic diet was to find my triggers and you can find the general outline of how to do one over the internet but I strongly suggest seeing someone to support you through it like a homeopath or nutritionist just to make sure you don't get sick eliminating things from your diet. I feel more in control of my body since the detox/diet since now I know how my body reacts to certain foods and can understand a flare up or stomach ache - its really empowering!
I haven't heard about yag laser - please tell me more!  It sounds expensive but complete remission would be amazing.
I'm sorry I can't be more helpful but hopefully having a dialogue will help us both!  Thank you for the email,
Adrianna
---------------------------------------------

Hi Adrianna!Thank you for your e-mail!

About the Yag laser I'll send you some links to websites,where you can find detailled information:

http://www.asclepion.com/root_corporate/pdf/studies/MCL%20Efficacy%20of%20erbium%20laser%20ablation%20in%20darier%20disease%20and%20hailey-hailey%20disease.pdf

http://webcache.googleusercontent.com/search?q=cache:6eA19evcLAkJ:www.ehow.com/way_5670338_laser-therapy-darier_s-disease.html+laser+therapy+for+darier's+disease&cd=2&hl=bg&ct=clnk&gl=bg

I didn't recently speak to a dermatologist about this procedure and don't know the prices, but I think it will be expensive too.The procedure must be done during autumn or winter,here the dermatologists don't have any experience regarding the use of Yag laser for DD,that's also why I hesitate.

I found here Maritime Pine Bark and will try it.Also I start again taking Vit A+E, Fish oil and will include Vit B complex.I continue with 4 Life Transfer Factor,you can check on it,it's not a medication but a supplement, very good for the immune system and recommended for autoimune diseases, what is DD.

I'll see what I can do about the diet,I never have been allergic to food,but regardind DD,I noticed that it gets worse after drinking alcool or eating chocolate,desserts.

About the medications, after using Neotigason,I don't want to  hear about any oral retinoids,it was really awful.I can recommend you to use topical creams with antibiotics and corticosteroids ,just in case of inflammation and infection.

Thanks again for the information,hope we'll keep in touch!

More emails from great people from around the world who also have DD - our thoughts over email shared for your interest:


Hi Adrianna!My name is Tsvetelina, Eastern Europe.I was diagnosed with Darier's disease 10 years ago,now I'm 29.When I was searching on the web for new information and treatment of DD, I  found the site www.skinpatientsalliance.ca and your postings.As I also have the disease, I think and hope that we can exchange information about therapies and treatment of DD and help each other.
Like you, I've seen a lot of dermatologists,most didn't know about DD or know a few.After being diagnosed with DD, I hardly wanted that biopsy was wrong.I even took second biopsy,still the same - Darier's disease.So I had to admit I should live with it and find a treatment wich will work for me.That isn't easy,as you know that for now,there's no total cure of DD, only supporting treatment unfortunately.
With the years I have outbreaks more often,especially when I have my period.I've been taking oral retinoids - Neotigason,but only for 2-3 months because it caused me hard loss of hair.I also used topical retinoids -Retin A,Adapalene also known as Differin ( I still use it,it gives me good results) and others.I also use corticosteroids as cream - Fucicort ,wich also contains antibiotics,and I also have been on injections with corticosteroids,didn't help a lot.I have had procedures of chemical peeling,that also didn't help me a lot.As I didn't find the "right therapy",  I keep searching .And I try to stay positive and believe that somehow things will be better.
I also take vitamins and supplements but not regularly.From 2 weeks I'm taking 4 Life Transfer Factor Plus( www.4life.com) and I expect a good result.As I learn in your blog about your Hypoallergic diet ,I'm interested in what exactly it consist(I never made a diet for DD).Also about the vitamins and supplements you're taking,in what doses,and for what periods of time?Now I'm also thinking on the possibility for a surgery with Yag Laser,I read articles that it works on DD and even a complete remission can be achieved.
Hope you'll write me back and we can give a hand on our common problem - Darier's disease.
Best regards,
Tsvetelina
-------------------------------


Hello!
Good to meet you - and I'm sorry that you too have DD. I have posted my dosages on the website but tend to stay away from much detail because I am not a doctor nor a health practitioner - take the vitamins and suupliments to your natural path or health practitioner to get the dosage that is right for your body. Right now I take Vit B1,6,12 complex, Zinc/copper, Vitamin D, A, sometimes C, omegas on occasion when I haven't had fish in that day, probiotics, maritime PINE BARK! is my saviour. It is my miracle pill.  Look into it - I couldn't live without it!
I'm having troubles seeing all my posts on skinpatientalliace and have called them recently to figure it out - I'm thinking most of my dosage entries are there.  I hope they will figure it out with me soon!
I haven't tried most of the medication you have listed - the side effects scared me off too quickly and so did the prices! The hypoallergenic diet was to find my triggers and you can find the general outline of how to do one over the internet but I strongly suggest seeing someone to support you through it like a homeopath or nutritionist just to make sure you don't get sick eliminating things from your diet. I feel more in control of my body since the detox/diet since now I know how my body reacts to certain foods and can understand a flare up or stomach ache - its really empowering!
I haven't heard about yag laser - please tell me more!  It sounds expensive but complete remission would be amazing.
I'm sorry I can't be more helpful but hopefully having a dialogue will help us both!  Thank you for the email,
Adrianna
---------------------------------------------

Hi Adrianna!Thank you for your e-mail!

About the Yag laser I'll send you some links to websites,where you can find detailled information:

http://www.asclepion.com/root_corporate/pdf/studies/MCL%20Efficacy%20of%20erbium%20laser%20ablation%20in%20darier%20disease%20and%20hailey-hailey%20disease.pdf

http://webcache.googleusercontent.com/search?q=cache:6eA19evcLAkJ:www.ehow.com/way_5670338_laser-therapy-darier_s-disease.html+laser+therapy+for+darier's+disease&cd=2&hl=bg&ct=clnk&gl=bg

I didn't recently speak to a dermatologist about this procedure and don't know the prices, but I think it will be expensive too.The procedure must be done during autumn or winter,here the dermatologists don't have any experience regarding the use of Yag laser for DD,that's also why I hesitate.

I found here Maritime Pine Bark and will try it.Also I start again taking Vit A+E, Fish oil and will include Vit B complex.I continue with 4 Life Transfer Factor,you can check on it,it's not a medication but a supplement, very good for the immune system and recommended for autoimune diseases, what is DD.

I'll see what I can do about the diet,I never have been allergic to food,but regardind DD,I noticed that it gets worse after drinking alcool or eating chocolate,desserts.

About the medications, after using Neotigason,I don't want to  hear about any oral retinoids,it was really awful.I can recommend you to use topical creams with antibiotics and corticosteroids ,just in case of inflammation and infection.

Thanks again for the information,hope we'll keep in touch!