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Thread: My story, two months after diagnosis. Life goes on!

  1. #11
    Senior Member Brady Barrows's Avatar
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    Quote Originally Posted by christine123 View Post
    Brady: The fact of the matter is that sugar and most grains are both acidic and inflammatory by nature. Since rosacea is an inflammatory condition, it's pretty much a no-brainer that anything that promotes inflammation will make rosacea worse. Also, gorging on acidic foods upsets the pH balance of the body and leads to more acidic tissues which also triggers more inflammation. So basically to tell people to 'gorge on inflammatory foods and if your rosacea suffers from it, oh those foods cause rosacea!" is not really finding the solution to the problem. It's not the whole story. If that was the whole story then everyone in NA would have rosacea from eating sugar and carbohydrates in excess. Another person could just as legitimately say, 'stay out of the sun at all times for a month and then after that, go in the sun as much as you want to and if your rosacea gets worse, then you know the sun is the problem! The problem usually lies somewhere else. A trigger does not equate with cause and merely avoiding triggers does not address the root issue. Sure, in the case of sugar and carbohydrates, you will undoubtedly be healthier by not eating them to excess but that doesn't explain why rosacea seems to randomly show up in certain people despite the fact that 99% of people in NA eat way more than your recommendation of carbohydrates and sugars.

    Again, reducing triggers does not address the root cause but of COURSE will benefit rosaceans. Also, if beating that drum for 15 years has not produced a cure, then perhaps it's time to start playing another? Avoiding sugar is good advice for everyone and will probably benefit people's health no matter what condition they have, but I think most people here would much rather have remission than having to resort to a militaristic strictness on their diet for the rest of their life.
    I have never said or written anything that suggests that sugar (or carbohydrate) causes rosacea. You are jumping to a conclusion that I have never promulgated. Trigger avoidance is a widely accepted treatment for rosacea. One common trigger is excessive heat such as saunas or hot baths. Avoiding excessive heat is a way to control rosacea through trigger avoidance. Suggesting a trigger avoidance such as excessive heat doesn't mean implying that it is the cause of rosacea. Trigger avoidance is usually suggested by dermatologists who parrot the trigger list the NRS promulgates and many of these triggers are diet related. The first ones on the NRS list are liver, yogurt and sour cream. Now how did these get on the list? They were suggested by anecdotal reports collected by the NRS. Does this mean that if you eat liver, yogurt or sour cream that you will have a rosacea flare up? No. It just means that a number of rosaceans suggested these as rosacea triggers. Does this mean that since liver, yogurt and sour cream are on the NRS rosacea trigger list that these three items cause rosacea or at the 'root cause' ? Hardly. I suggested that sugar and carbohydrate are rosacea triggers over thirteen years ago and this suggestion is as valid as liver, yogurt and sour cream, if not more so, because there are a number of anecdotal reports in this forum and elsewhere that they are indeed rosacea triggers. Try to find a thread on liver, yogurt or sour cream. Can't find one? Wonder why? It is on the NRS trigger list? Why doesn't anyone discuss any of these three foods as a rosacea trigger? Now, search for threads on sugar and rosacea in this forum. Notice how many report that these are rosacea triggers. Why doesn't the NRS list sugar or carbohydrate as rosacea triggers? The RRDi does list both sugar and carbohydrate as rosacea trigger. And you will find nothing written that says either one causes rosacea either by me or the RRDi. They are simply potential rosacea triggers for some.

    No one is compelled to a militaristic strictness on their diet to control rosacea, any more than one has to take metronidazole, accutane, or low dose antibiotics for the rest of their lives. Everyone can choose how they want to control their rosacea. So far there is no cure for rosacea. A few have reported remission of their rosacea but usually in time rosacea returns. At this point there are only controls for rosacea. One of the missions of the RRDi is to find a cure. Do you see any advertisements for pharmaceutical rosacea drug treatment on the RRDi site? The RRDi is open to anyone who wants to post new ideas on how to treat rosacea.
    Last edited by Brady Barrows; 1st October 2012 at 12:19 AM.
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    Senior Member Brady Barrows's Avatar
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    By the way, the inflammatory theory on the cause of rosacea is just that, a theory. The evidence is fairly well established that rosacea is an inflammatory disorder, and I tend to believe this myself, but the jury is still out on this. Over ten years ago the general consensus was that rosacea is a vascular disorder. The vascular theory hasn't really been discussed any more. Gallo and his crew have been given the limelight on the inflammatory theory and the cathlecidin research Dr. Gallo has been doing. We are still waiting for a treatment, aren't we? Lately the media has been suggesting that at the very least demodex mites may be responsible for some rosacea sufferers and that the mites may have a bacteria that is causing an inflammatory reaction. This, of course, is still a theory. There may be different causes for different types of rosacea. My favorite quote is from Dr. Draelos:

    "Rosacea is probably a collection of many different diseases that are lumped together inappropriately." source
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    Quote Originally Posted by Brady Barrows View Post
    Thanks for you posts floridagirl and willingtotry,

    I have been beating the drum that sugar is a rosacea trigger for over thirteen years. What have you noticed with regard to your rosacea, any improvement? The concept is to eat as much protein and fat as you want. Just reduce the carbohydrate. Carbohydrate, which is just different forms of sugar, is a rosacea trigger. And contrary to popular opinion, carbohydrate is not essential for human survival. Now most people get perturbed when you take away their carbohydrate, especially sugar. However, no one is actually taking anyone's carbohydrate away, we do this voluntarily to control our rosacea. And the reason we have sugar or carbohydrate is that it makes life sweet. We enjoy it a lot. If you have rosacea, you simply have to limit your carbohydrate to control your rosacea. You can have it sometimes and within certain limits. And the more you experiment with carbohydrate intake the more you will understand how much of it you can eat before you trigger a rosacea flare up again. Keep us posted on your progress. I think I am going to begin a page devoted to anecdotal reports of those who have cut out carbohydrate and how it has improved their rosacea.
    Hi Brady,

    I have noticed that if I have less carbs, my face seems to look better. I bought a juicer last month and juiced for a few days. I used apples, bananas, strawberries, blueberries, melons, etc. I noticed that my face actually looked worse after a few days of juicing. Then I realized that each juice I made was full of sugar. Natural, yes, but still a lot of sugar. Something about the fruits I use in juicing did not seem to work for me. Must have been the sugar. Now I get less than 10 grams of sugar a day and it is natural sugar. I need to find juicing recipes that use veggies but those just don't taste as good to me.

    I was also eating a lot of blueberries every day. Then I realized how much sugar was in half a cup of blueberries. Now I just stick to small amounts of raspberries for now and that has helped my sweet tooth. I do still get about 200 grams of carbs every day and I can't imagine cutting down to 35 grams or something like that. I get about 100 grams of protein and 100 grams of fat a day. I don't know much about nutrition, but that seems like a lot. It would be very challenging to cut down on carbs. I am afraid I would lose too much weight. I am bordering on looking too skinny right now. I am running out of dinner ideas. I tend to eat roasted chicken with tarragon and thyme and a large salad with beans in it for dinner. I snack on almond butter a lot. I just started drinking coconut milk and it is delicious and does not seem to affect my skin. Quinoa seems to be okay for me but it does make my stomach burn a little bit. I would love some more ideas for dinner and breakfast and snacks but I am also afraid to branch out and try new foods too quickly. This is still a learning process! Thanks for all of your help!

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    Quote Originally Posted by Ghost View Post
    That does sound like a good lunch. Carrots and cukes are good to dip, too.

    The castor oil might get in to your eyes, but it won't hurt them. It's really thick so it does tend to stay where you put it (on the lashes). As you use it, you'll discover how to control it.

    I read how in aryuvedic medicine castor oil is good for lashes AND putting it on your lashes promotes sleep. Also, I read that castor oil is a natural remedy for cataracts. In that case it does get into the eyes.

    In my anti-demodex work I have also applied tea tree oil mixed with macadamia oil to my closed eyelides. I haven't got an exact recipe. I just poured macadamia into a little lid and put a couple of drops of tto in there. STirred with my finger and applied (eyes closed, of course). At hand I had a clean washcloth. After 5 mins I wet the washcloth with warm water and pressed it to my lids to get the oils off; repeated till clean. I increased the tto in the formula each day. 5 drops seemed right. I haven't done this in a while. I think I got rid of the pesky bugs. But I use things like lid cleansing foam once every 10 days - 2 weeks just to make sure things stay clean.
    Thanks! I will definitely get some of the castor oil and try it. I know cleaning my eyes with warm water and eye scrubs helps, but they are starting to itch a lot in the night. I try not to touch them but it is difficult.

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    Quote Originally Posted by willingtotry View Post
    Floridagirl,

    Let me know how you go with your trip. You seem like you have the right attitude and environment to cope with this. Keep us updated on how you go and share any secrets. I am interested to know as we are on a similar timeline.

    Wtt
    Thanks. I will keep in touch. Some days are better than others, but I know that attitude is everything. When I start to feel down about this, I try to shake it off as quickly as I can. After all, it is not lethal, just annoying. I don't want it to take away my happiness and it won't as long as I don't let it.

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    hi floridagirl ,im a floridagirl too lol , im glad to see you are doing well and have come to terms with this disease ,I am not able to no matter how hard I try ! ,i wake up daily hating the way I look and feel and wish I could go back to the days before this , I miss eating the way I want and so what if it healthier now , i dont car that much about healthier id rather be happy !! and since i was diagnosed I cant think of one day that I was truly happy and not thinking about rosacea ! maybe it will just take me longer to cope who knows... anyways yesterday I tried almond milk and im not sure if thats what made me flare today .. should it be unsweetened or original ,I boght original but when i got it i really didnt know there was different ones besides flavored ones. Problem with me seems to be the same with you ,I need more things to add weight ! and i cant see to get enough ugh . I wish i had better coping skills and funny thing is you'd think i was a good looking girl who had lost her looks ,ive alway been just average and never had a beautifu complexion, I am just so disappointed that now that im older I thought skin problems were behind me and i could just enjoy not being so spotty! now i get to deal with red and spotty and ugly , great .. sorry about the rant ,im still looking for a way to deal and cope

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    Quote Originally Posted by allalone View Post
    hi floridagirl ,im a floridagirl too lol , im glad to see you are doing well and have come to terms with this disease ,I am not able to no matter how hard I try ! ,i wake up daily hating the way I look and feel and wish I could go back to the days before this , I miss eating the way I want and so what if it healthier now , i dont car that much about healthier id rather be happy !! and since i was diagnosed I cant think of one day that I was truly happy and not thinking about rosacea ! maybe it will just take me longer to cope who knows... anyways yesterday I tried almond milk and im not sure if thats what made me flare today .. should it be unsweetened or original ,I boght original but when i got it i really didnt know there was different ones besides flavored ones. Problem with me seems to be the same with you ,I need more things to add weight ! and i cant see to get enough ugh . I wish i had better coping skills and funny thing is you'd think i was a good looking girl who had lost her looks ,ive alway been just average and never had a beautifu complexion, I am just so disappointed that now that im older I thought skin problems were behind me and i could just enjoy not being so spotty! now i get to deal with red and spotty and ugly , great .. sorry about the rant ,im still looking for a way to deal and cope
    I understand how you feel. I miss eating foods I want, too. I used to love cooking and going out to dinner at a nice restaurant. Now I don't even want to. I used to love a nice glass of wine, now I don't drink. I never had any skin problems before this, so that has been difficult for me. I can't really wear eye makeup for my new rosacea related eye issues and I have been wearing glasses most of the time. I really dislike that. I have found some glasses that I like wearing, so that has helped. It's all about accepting and moving forward. You've got to.

    My husband says he does not care about my blotches and that has helped, but the real way I have learned to cope is to ask myself if rosacea will kill me. Will it? No. Can I still travel? Can I still get my college degree? Will my husband still love me? Can I still live to be an old lady? I think so. The only time I truly feel weak is when my ego gets to me. Vanity. How important is it to me if others think I am gorgeous or not? Will people stop thinking I am a worthy person if I have red cheeks with blotches? Of course not! I am more than that. Sometimes I see people with blotches on their cheeks and I only just noticed because now I have them too. People with good personalities can definitely overshadow their skin issues to a point that you don't even see it. I want to be such a positive force that people won't even notice my skin if I am having a bad skin day.

    I think this whole rosacea issue has forced me to deal with self confidence issues. Why would I derive my self worth from my looks? That is not healthy. How I look is not important at all, and worrying about it does nothing but take away time that I could be enjoying myself. Life is so short already, and there will always be obstacles and issues in everyone's life. No one has a perfect life. I know people who are deathly allergic to certain foods. If they eat it, they could die. The worse thing that can happen to me if I eat a cheeseburger is that I'll get a few spots on my face. I had to change my mindset. I had to accept it for my own mental well being. Mind you, I am still rather bothered by it if I allow myself to fixate on it. I ask, "Why me"? But really, why not me? It is a common skin condition, I am of Celtic descent. My grandpa had it. I could have something else, but I have this. Having this and in turn eating right and not drinking might help me not have other health issues. It's all in how you look at it.

    I hope I have helped you in some way. If you can, try to remind yourself that everything is okay. No one is perfect. If skin issues are the most we have to worry about, we're doing okay.

    By the way, I get unsweetened almond milk. I just switched to unsweetened coconut milk and it tastes much better to me but I like them both, really.

    And here are some quotes I have read that have helped me realize that accepting this is the best thing I can do for myself.

    “Whenever you accept what is, something deeper emerges than what is. So, you can be trapped in the most painful dilemma, external or internal, the most painful feelings or situation, and the moment you accept what is, you go beyond it, you transcend it. It may still be there, but suddenly you are at a deeper place where it doesn’t matter that much anymore.”
    Eckhart Tolle

    "The most common ego identifications have to do with possessions, the work you do, social status and recognition, knowledge and education, physical appearance, special abilities, relationships, person and family history, belief systems, and often nationalistic, racial, religious, and other collective identifications. None of these is you.” Eckhart Tolle

    “Living up to an image that you have of yourself or that other people have of you is inauthentic living.” Eckhart Tolle

    "To be beautiful means to be yourself. You don't need to be accepted by others. You just need to accept yourself." Thich Nhat Hanh

    “Give up defining yourself - to yourself or to others. You won’t die. You will come to life. And don’t be concerned with how others define you. When they define you, they are limiting themselves, so it’s their problem. Whenever you interact with people, don’t be there primarily as a function or a role, but as the field of conscious presence. You can only lose something that you have, but you cannot lose something that you are.” Eckhart Tolle

    “Your worst enemy cannot harm you as much as your own thoughts, unguarded.” Buddha

  8. #18
    Senior Member Brady Barrows's Avatar
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    Quote Originally Posted by floridagirl View Post
    Hi Brady,

    I have noticed that if I have less carbs, my face seems to look better. I bought a juicer last month and juiced for a few days. I used apples, bananas, strawberries, blueberries, melons, etc. I noticed that my face actually looked worse after a few days of juicing. Then I realized that each juice I made was full of sugar. Natural, yes, but still a lot of sugar. Something about the fruits I use in juicing did not seem to work for me. Must have been the sugar. Now I get less than 10 grams of sugar a day and it is natural sugar. I need to find juicing recipes that use veggies but those just don't taste as good to me.

    I was also eating a lot of blueberries every day. Then I realized how much sugar was in half a cup of blueberries. Now I just stick to small amounts of raspberries for now and that has helped my sweet tooth. I do still get about 200 grams of carbs every day and I can't imagine cutting down to 35 grams or something like that. I get about 100 grams of protein and 100 grams of fat a day. I don't know much about nutrition, but that seems like a lot. It would be very challenging to cut down on carbs. I am afraid I would lose too much weight. I am bordering on looking too skinny right now. I am running out of dinner ideas. I tend to eat roasted chicken with tarragon and thyme and a large salad with beans in it for dinner. I snack on almond butter a lot. I just started drinking coconut milk and it is delicious and does not seem to affect my skin. Quinoa seems to be okay for me but it does make my stomach burn a little bit. I would love some more ideas for dinner and breakfast and snacks but I am also afraid to branch out and try new foods too quickly. This is still a learning process! Thanks for all of your help!
    Flordagirl,

    You can get a free copy of my Rosacea Diet by following the directions here for ideas. The only point of reducing to 30 grams of carbohydrate a day for 30 days is to convince yourself that reducing carbohydrate does indeed improve rosacea. If you want to keep eating all that fruit that is up to you. You can always take the prescriptions offered by your dermatologist and continue eating what you want. That is what most rosaceans want to do anyway, so don't feel bad about that, most simply want to keep their present lifestyle eating habits and take a pill or a a topical. Believe me, I understand how difficult it is to reduce carbohydrate to 30 grams a day. The Rosacea Diet isn't for sissies.
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    Quote Originally Posted by Brady Barrows View Post
    Flordagirl,

    You can get a free copy of my Rosacea Diet by following the directions here for ideas. The only point of reducing to 30 grams of carbohydrate a day for 30 days is to convince yourself that reducing carbohydrate does indeed improve rosacea. If you want to keep eating all that fruit that is up to you. You can always take the prescriptions offered by your dermatologist and continue eating what you want. That is what most rosaceans want to do anyway, so don't feel bad about that, most simply want to keep their present lifestyle eating habits and take a pill or a a topical. Believe me, I understand how difficult it is to reduce carbohydrate to 30 grams a day. The Rosacea Diet isn't for sissies.
    Thanks, Brady!

    My goal is to not use the metro cream that has been offered to me. I have a whole tube in my bathroom, but I have not opened it yet. I want to eat right and get to the root of the problem. To me, taking topicals is the last thing I want to do. My immune system must be weakened and I want to take care of myself. Thank you for the offer of the book. I will definitely get it. I am willing to try to lower my carb intake just to see what happens. Stopping fruit is not that hard, but I love lentils and rice and sweet potatoes and such, they have been the cornerstone of my diet lately.

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    Default Thank goodness I'm not alone!

    Quote Originally Posted by floridagirl View Post
    Hi there everyone,

    I was diagnosed with rosacea and seb derm in July or August. I also have blepheratis now apparently. It all happened at once when I returned from a trip to Scotland and I still don't know why. I am a young woman and have always had great skin. Anyway, I came to this group right away and noticed that diet change helped people, so I decided to go that route instead of using prescriptions.

    I decided that sugar was one of the likely culprits and I immediately stopped eating refined sugar. It was hard. For a week, I had sugar withdrawals. I felt terrible and I was frustrated because I could hardly find any food that did not contain added sugar. I had headaches, felt tired and wanted sugar so so badly. I had dreams of oreos and pies and cakes. It was intense! I was never really a sweets girl so I was surprised by my cravings.

    I also stopped eating bread, white flour, dairy, red meat, and I stopped caffeine just because it seemed like it made me a little anxious and at this point in my life, I needed to remain calm. My friends and family seemed to think I was insane. Why would I not want to eat a cheeseburger or a doughnut? It's just a blotchy face, who cares? But to me it mattered because my body was trying to tell me something and I needed to listen. I started a food diary and eliminated things here and there. I still have some confusion about certain things. If I had a flare, was it because they put butter on salmon I ordered in a restaurant or was it because I had a car accident that stressed me out? Was it the Florida heat or the cinnamon I ate? Still, I am figuring it out, slowly but surely.

    Right now, I have discovered these seem to be my safe foods but this is a work in progress:

    Almonds, chicken, brown rice, sweet potatoes, fish, flax seeds, arugula, lettuce, sprouts, cucumbers, bell peppers, almond butter, almond milk, raspberries, lentils, chickpeas, turkey, black beans, cannellini beans, zucchini, squash, eggs, onions, Ezekial tortillas.

    This week I am trying to cut wheat out completely because I am thinking that wheat may have something to do with my blotches. I tried quinoa for the first time this morning as a replacement for my Ezekial cereal that I love so much. We shall see if I can tolerate it or not. I think I eat too many carbs, so I am trying to see about getting less carbs, but that will be hard for me. I usually weigh about 105 but now I weigh 98 pounds. I am 5 ft 1. I want to gain 5 pounds because my clothes no longer fit well.

    Life without sugar is easier than it once was, but I still want to eat like everyone else sometimes. It makes me feel afraid to go out to eat to or parties because I know people won't understand why I can't eat certain things. They'll think I'm just being a raw food hippie and I don't really want to talk about my rosacea to people, it is just awkward.

    Seb derm: I am still trying to figure out how to deal with it. It is very mild and I use Head and Shoulders, but I think I need something a little stronger to keep it in check. Head and Shoulders seems a bit harsh, so I am looking into Aveda's scalp line. I have heard good things about it and it is more natural.

    Blepheritis: Thanks to this forum, I learned to do warm eye compresses and eye scrubs daily. My bleph is currently contained and I can wear contacts again, although I have switched to daily contacts. I just warm up some water on the stove, get a clean soft washcloth, go to the bathroom and find an audio book on booksshouldbefree.com and listen to it on my Ipad while I soak my eyes for 10-15 minutes twice a day. I would love to lay down in bed with the warm cloth but it does not stay warm long enough. I saw an eye doctor yesterday who said my eyes look good and I have been taking good care of them. Of course, I have lost a few eyelashes and that has bothered me a little, but I am trying to not let my ego get to me anymore.

    This whole sitation has been very humbling and has taught me about what is truly important in life, and looking perfect is not important. My new mantra is, "Feeling good is more important than looking good." On a bad day when my face is red, I just remind myself that it is temporary. Caring for my eyes is my priority at this moment. As long as my eyes are healthy and I can still get around, I am fine.

    Some days are better than others, but I find that it IS manageable at this point. I think if I keep my stress levels down and learn to accept my condition, I will be a stronger and better person. I no longer drink or eat processed foods. How can that not be adding years to my life? It has opened my eyes to the amount of junk that we Americans usually eat on a daily basis.

    I read on here somewhere to not fight the condition, accept it. I think that is the best advice. I can't go back to the time when I did not have this condition, but I can live with it. It won't kill me. In a way, it might save me because it is telling me not to eat junk, not to drink alcohol, stay away from refined sugar. Maybe I'll live longer!

    Again, I am still at the beginning of my journey but I wanted to write this down in case someone is newly diagnosed and feels like hope is gone. It is not. Those who survive are the ones who learn to accept and adapt to change. That is what I am trying to do. There is light at the end of the tunnel.

    Hello,
    I'm completely new to all of this. I was just diagnosed with Acne Rosacea this morning. I've been battling it for almost a year. Your story is so comforting. I too have changed my diet within the last 2 months in order to control my skin. No sugar (no fruit actually) or processed foods and nothing spicy. I'm still experimenting with certain foods. I've been put on doxycycline (spelling?) and a topical lotion.
    Are you on any prescriptions? If so, do they help? Also, what is your face wash regimen? What products do you use? I'm at a loss as to what products to use on my face.
    Any advice would be so much appreciated!

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