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

  1. #1
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    Default My story, two months after diagnosis. Life goes on!

    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.

  2. #2
    Senior Member Ghost's Avatar
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    Florida, for your eyes try castor oil. Get Castor Oil/Palma Cristi on line or at the health food store. 4 oz is the smallest, so get that. Apply it at night with a clean q-tip for every dip/section of eyelid; meaning -- fresh tip for right upper lash line, fresh tip for right lower lash line...

    Just line your lashline, hitting the base of the lashes.

    It might sting the first few times, but the idea is you're going right to bed: lights out, close your eyes.

    The castor oil will barely be there in the morning, so don't worry about that.

    I believe the castor oil both poisons and drowns the demodex. Whatever it does, it's helped my eyes a ton.

    BTW, stuff you eat sounds great. Have you tried cauliflower and wild rice to expand your choices?

    G
    "It's all illusion anyway."

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    Hi Floridagirl,

    Great post! I too got diagnosed in July and am going through the same diet issues as you are. You are definitely way ahead of me in know what you can and can't handle. Well done! I think we all must come to terms with our condition after a couple of months as it took me a while too. However, i am now more at ease with it than i was before. I am still having my good and bad days and i am learning very early not to get too carried away with the good days because there is a bad day just around the corner. Emotionally, the first month was hell. You are right, we can't turn back time and what is done is done. I am pretty sure my condition came to be because of a combination of diet + anxiety.

    The only way for us is now to look forward, but i can't say that i face each day with optimism. I am trying to do everything diet related to manage this problem with the hope of putting it into remission one day. I may be a little too optimistic, but that is the challenge i put forward for myself.

    The diet has been a tough one for me because of my fear of flaring whilst at work. This has made me scared of food and when i have a setback, i just go back to juicing because it seems to settle me. However, i am losing weight too quickly. I am a fit male and was 97kg (not sure what that is in pounds), but in the space of 10 weeks, have dropped to 90kg, which is roughly 15 1/2 pounds in your language. Losing a few kg's/pounds didn't really hurt as i could have lost a couple, but now i am going into unchartered territory where i haven't been lower than this weight since a teenager. Also, i have had to buy a whole new drobe and am even finding some clothes that i bought a month ago getting a little too loose for me.

    Anyway, even though i had a few bumpy days last week, i am also slowly coming to grips and accepting my condition. I am opening up a little more about it, which i find a bit therapeutic. I have always been very concerned about my looks and this has really thrown me. This has been and will continue to be a humbling experience and I am hoping will make me a stronger person. At the very least, I will be much much much healthier than my past pre rosacea life. I am not a religious person), however, in the back of my mind i feel like this condition was a warning sign from from the big man upstairs. I think he has given me a tap on the shoulder, told me to get my health together because i was on the way to something worse.

    Again, I enjoyed reading your story as i can totally relate.

    Wtt

  4. #4
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    Quote Originally Posted by Ghost View Post
    Florida, for your eyes try castor oil. Get Castor Oil/Palma Cristi on line or at the health food store. 4 oz is the smallest, so get that. Apply it at night with a clean q-tip for every dip/section of eyelid; meaning -- fresh tip for right upper lash line, fresh tip for right lower lash line...

    Just line your lashline, hitting the base of the lashes.

    It might sting the first few times, but the idea is you're going right to bed: lights out, close your eyes.

    The castor oil will barely be there in the morning, so don't worry about that.

    I believe the castor oil both poisons and drowns the demodex. Whatever it does, it's helped my eyes a ton.

    BTW, stuff you eat sounds great. Have you tried cauliflower and wild rice to expand your choices?

    G
    Thank you for the suggestion! I will look into that. Does the castor oil get into the eyes or do I try to prevent that?

    About the food, yes, I forgot to mention that I like the wild rice mix from the Lundberg brand and I also eat broccoli and cauliflower. Sometimes I eat them with some organic hummus I found at Publix during a desperate search for an acceptable lunch option for my office lunches. I just dip broccoli and cauliflower in hummus. It's not the most exciting lunch, but it is better than running across the street to McDonalds out of hunger!

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    Quote Originally Posted by willingtotry View Post
    Hi Floridagirl,

    Great post! I too got diagnosed in July and am going through the same diet issues as you are. You are definitely way ahead of me in know what you can and can't handle. Well done! I think we all must come to terms with our condition after a couple of months as it took me a while too. However, i am now more at ease with it than i was before. I am still having my good and bad days and i am learning very early not to get too carried away with the good days because there is a bad day just around the corner. Emotionally, the first month was hell. You are right, we can't turn back time and what is done is done. I am pretty sure my condition came to be because of a combination of diet + anxiety.

    The only way for us is now to look forward, but i can't say that i face each day with optimism. I am trying to do everything diet related to manage this problem with the hope of putting it into remission one day. I may be a little too optimistic, but that is the challenge i put forward for myself.

    The diet has been a tough one for me because of my fear of flaring whilst at work. This has made me scared of food and when i have a setback, i just go back to juicing because it seems to settle me. However, i am losing weight too quickly. I am a fit male and was 97kg (not sure what that is in pounds), but in the space of 10 weeks, have dropped to 90kg, which is roughly 15 1/2 pounds in your language. Losing a few kg's/pounds didn't really hurt as i could have lost a couple, but now i am going into unchartered territory where i haven't been lower than this weight since a teenager. Also, i have had to buy a whole new drobe and am even finding some clothes that i bought a month ago getting a little too loose for me.

    Anyway, even though i had a few bumpy days last week, i am also slowly coming to grips and accepting my condition. I am opening up a little more about it, which i find a bit therapeutic. I have always been very concerned about my looks and this has really thrown me. This has been and will continue to be a humbling experience and I am hoping will make me a stronger person. At the very least, I will be much much much healthier than my past pre rosacea life. I am not a religious person), however, in the back of my mind i feel like this condition was a warning sign from from the big man upstairs. I think he has given me a tap on the shoulder, told me to get my health together because i was on the way to something worse.

    Again, I enjoyed reading your story as i can totally relate.

    Wtt
    Thank you! Where do I start? I could have written exactly what you just wrote. I am also hoping to put my rosacea into remission of some sort, but I am reminding myself daily not to think that it's gone when it goes away for a day or two. Some days, my skin looks like before, but even healthier. Maybe it's because of the new skin routine (Cetaphil and cold water) and my new healthier diet. I also take fish oil pills and I think that has helped my skin. Staying out of the sun in the middle of the day has also helped.

    Sometimes I have a day when I have spots and I just can't figure out why. I do think that it is often stress. I am a college student, future teacher, a wife of 5 years. I work full time. I have a lot of stress in my life. I think managing my stress levels has been very important, and it has also been important to "talk myself down" when I feel sad about having this. I have a little paragraph in my diary that I read to pump myself up. It's a list of things that are awesome about my life--my husband, my loved ones, nature, green tea and coffee (even if lukewarm and decaffeinated with no milk and sugar), a good meal (yes, they still exist), my health. This rosacea makes me feel "unhealthy" sometimes but I also feel better than I have felt in a long time. Like you, I am not religious, but I think this is my body telling me to take care of myself, don't let stress get to me, eat right, accept yourself,enjoy life!

    I have also become a little afraid of food. That has been annoying. I am going camping this weekend and I feel a little bit of anxiety about it, wondering if I'll get too hot. Will I seem antisocial if I don't accept a beer? Can I clean my eyes and face properly out there? What will I eat? Rosacea adds a new dynamic to life, but I think once I find a pattern, I can figure this out and solve the mystery about how to adapt to it. I think I'm taking a thermos of lentils with bell peppers and squash and some boiled eggs and sweet potatoes along with a thermos of hot water and some wash clothes for my eyes.

    I am trying my best to control this, if I can, with diet and lifestyle change. If I can't, I am trying not to worry about it. Trying to control it is stressful in itself. They say that trying to control anything in life is a major cause of stress. I am trying to accept it so that I can get some feeling of control back into my daily life. I don't want this to define me. I won't let it. I will eat right, enjoy life, learn to adapt to it and not worry about it. That's my goal right now.

    Good luck to you!
    Last edited by floridagirl; 30th September 2012 at 04:48 PM.

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    Quote Originally Posted by floridagirl View Post
    Thank you for the suggestion! I will look into that. Does the castor oil get into the eyes or do I try to prevent that?

    About the food, yes, I forgot to mention that I like the wild rice mix from the Lundberg brand and I also eat broccoli and cauliflower. Sometimes I eat them with some organic hummus I found at Publix during a desperate search for an acceptable lunch option for my office lunches. I just dip broccoli and cauliflower in hummus. It's not the most exciting lunch, but it is better than running across the street to McDonalds out of hunger!
    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.
    "It's all illusion anyway."

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    Senior Member Brady Barrows's Avatar
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    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.
    Last edited by Brady Barrows; 30th September 2012 at 05:21 PM.
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    Thanks Brady! I think i will do 30 days of no carbs pretty easily. I am happy with a few of your recommendations and after that i feel a little less scared about what i can and can't eat.

    I'll give myself a maximum of 35g and religiously stick with it.

    Thanks again!

    Wtt

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    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

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    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.
    Last edited by christine123; 30th September 2012 at 07:59 PM.
    Current skincare regime for rosacea subtypes I, II and IV started March, 2012:

    *Strict diet. No dairy, wheat, sugar, nuts/seeds, legumes. Only meat, 'safe starches', and low-phenol starchy/unstarchy fruits and veggies and water with ghee, lard and duck fat as cooking aids and sources of fat. Also avoiding food intolerances.
    Supplementing with raw food multivitamin, liquid zinc sulfate with copper, epsom salt baths (magnesium sulfate), calcium and vitamin C. Lots of water!

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