Treatment Review - Diet Management
Hello!
Sorry I've been AWOL over the weekend! We had a well earned night off from parenting on Saturday night, so we spent some time sleeping, went out for dinner and drinks with some friends, and generally relaxed! I even managed to get some art in!
So today I thought I would dive into the most frequently talked about treatment that I see alllllllllll over social media, and that is the clean eating, diet controlled - self-care option.
This is something I have mixed feeling about. As I've stated all along, I don't advocate for those who "push" treatments on people. I'm all for getting the information out there, but I'm not going to tell you what you should or shouldn't be doing.
I've come to the conclusion that most people who read this blog are adults. That makes you automatically able to take away from the crap I babble what you like.
I know we don't all agree on treatments, I know that we are all different, I know that we all believe in different things, have different ideas, and opinions, and that no two of us are affected exactly the same. This is something to always remember.
The Diet/ Naturopathic/ Holistic way of self-treatment is something that is very contentious, controversial, and has a strong following - Particularly on social media.
I'm going to start with my story, because, I want people to understand that it just isn't a suitable option for every case, and thats OK!
I mentioned in the FAQ last week, that this isn't something I would recommend for young kids, This is why.
When I was about 8 (ish) years old, my mum decided, under the coaxing of my Grandma from dads side, to try a Naturopath. So off we went. I sat in what looked like a doctors office, and she said to me that she was going to find my allergies by getting me to hold little glass vials, and she was going to "test" me to see if I had an allergy. This "Test" was done by making a ring with my thumb and index finger, and she should do the same from inside mine. If she could pull her fingers through and break mine apart - allergy. If she couldn't, no allergy. The vials were filled with different types of ingredients, things like wheat, sugar, dairy, metals, liquids, you name it. One by one she went through the many, many vials, and ticked off about every 2 out of 3 as an allergy.
I left that "doctor"s office with a list a foot long of what I wasn't allowed to eat, drink or touch. For an adult, this is a huge undertaking. For a kid? Damn near impossible. So here's my mum trying to convince me that rice cakes weren't that bad! You don't need bread! I got you some delicious Carob!! Just like chocolate! Yum Yum!
So here's the thing right. When you're a kid who has an Auto Immune disease, that presents VERY visually on your skin, you are treated differently, always. You are bullied and picked on for every distinguishable difference between you and them. I did my best to fit in, but ultimately accepted my differences. So when my diet was drastically restricted, it was just more to be picked on for. "Oh, now you can't even eat real food? Ya mums trying to starve you so you die and she won't have to worry anymore!" "HAHA look at her lunch! all she has is rice cakes and fruit!!"
This separated me from kids at school, again. I was excluded from parties because it's one thing to invite the kid that's different looking but otherwise the same, It was another to try and feed me at a party when every other kid is scoffing lollies, and cake and all the other good stuff at parties and I'm not supposed to eat any of it.
This went on for months and months until I couldn't deal with it anymore. Nothing was changing with my skin, it was still spreading and getting worse! I was also a very active, some would say hyper kid. This changed when the diet started because it's hard to be hyper when it feels like you're starving and have no energy.
I started stealing other kids food from their bags and sneaking away to eat it. I would beg to get other kids stuff they didn't want because I couldn't look at another rice cake! I even went to the teachers and told them I'd forgotten my lunch so they'd get me something from the canteen, even if it was just a cheese sandwich. I stopped eating anything mum sent to school with me. Didn't even look at it. Until mum started telling me off for not eating my lunch, so I still wouldn't look at it but would throw it away on my walk home from school. Then, I just kind of stopped eating. I didn't want it. Any of it. It was easier to go hungry because at least I knew I didn't have to eat the same crap all the time. This obviously alienated me even more, but I'm lucky that one of the people I stole from must have understood why, and actually became my best friend through primary and high school.
I used to hide honey under my bed to eat when no one was around. I would heap sugar into cereal when no one was watching. I even ate an entire bottle of orange flavored vitamins my sister had beside her bed one day because I thought they were lollies. Eventually mum gave up trying to enforce the diet, and we went back to Dr Derm. Soon after, was MTX, so as soon as I got my food back, I lost it again.
You see, my skin has never really been affected my food. Alcohol maybe, smoking definitely, but never really food. I was a kid, who was supposed to be growing, playing and learning. Food is vital to that, and living off a restricted diet at that age is just not something I would want to do to/for my child. While there may be benefits, I would rather wait until later in life when they can understand, and make the choice and commitment for themselves, because it is something that you really do get out what you put in. I was in no way prepared for that! I simply didn't have the desire to say no when the food I shouldn't have eaten was offered, because I still wanted it! I did not have the willpower of an adult. I did not have the coping mechanisms, self-restraint or self-discipline to stick to it. I was 8. All I wanted to do was eat junk, have fun and play, just like every other kid in the world.
As an adult this has HUGELY shaped my food preferences, lack of self control, affinity for unhealthy fast foods, and sweet tooth.
I only realize now, just how much.
We never really got alot of take away as a kid, fish and chips or pizza occasionally, Chinese food if it was a special occasion. As an adult, I have it frequently, but in my teens, after I moved out, it was as often as I could, sometimes daily. I've gotten better over the years, but we still eat it more crap than we should. I also hoard junk food, lollies and cereals. Because I was told I couldn't have it as a kid, now that I make my own decisions, I buy it every time we grocery shop. It's not because I want to eat it all the time, but because I like to know I can if I want to.
I'm now a qualified cook (which makes the amount of take away worse. :p)
I combined my knowledge and passion for food with my preference of working with my hands and started my own small business as a Professional Cake Decorator and Pastry Chef - Which is great as long as my skin and joints are under control, otherwise I don't take orders. Which is obviously a dubious and questionable career choice. Ironically, I don't even really eat what I make, not that big of a fan of cake! I just enjoy making them, and am always happy to see others enjoy it.
I've had Psoriasis since I was 5 months old. Food wasn't a huge issue for me then, obviously. I've never in 26 years noticed that eating any food in particular, flared me, and removing most foods didn't help me. If you have, then controlling your skin with diet may be a great treatment option for you! I've found for people who have developed Psoriasis later in life, this can be a great option, as it is usually triggered by something in our lives at that time. For me, and many other life long sufferers, these options don't often provide us with relief. That's not to say you shouldn't try it for yourself, as everyone's results are different.
As I mentioned, it really is something that will reflect what you put into it. Some people go Gluten free, sugar-free, Vegan, Some cut dairy but eat meat, some just eat healthily, some eat one specific food only. I would advise seeking professional advice as to what is recommended for you personally. A qualified dietician or even your rheum/ derm should be able to tell what foods are likely making you worse and which will be in your best interests to keep, to give you a good starting point.
If your chosen trusted medical professional tells you that they wouldn't recommend using it as your sole approach to treatment, that does not mean you cannot still choose to amend your diet and still use the medications or treatment options recommended by your doctor! Eating healthier is always going to be good for you, whether you are on other medications/ treatments or not!
We as sufferers place a lot of pressure on ourselves to be "normal". We do the best that we can in our day to day lives not to struggle and need help. We often wait as long as possible to ask for help - be it to get off the couch, for relief from pain, for a new treatment, because we feel like a burden. We should be able to do it ourselves! Everyone else manages, why can't we!?
Something I've seen with this "diet only" movement is this super laid back, casual "well you can see it works for me!" evidence, and telling people if they change enough or give up enough or do enough, that they *can* and *should* fix themselves - with No nasty chemicals or side effects! That if they don't succeed, it's because they haven't done enough, and if they choose not to try this option or not to continue when they haven't seen improvement, it's because it's just too hard for them, and they are saying no despite evidence and proven results.
This has been one thing I take issue with. Telling people that it is the best way to treat themselves. For the influencers, in their experience, that may well be the case. But I worry that other sufferers will see them, and their results and advice and believe that that is the best or even only treatment that is available to them, putting themselves through unnecessary prolonged pain and suffering. If they don't achieve the same results? It must be their own fault for not doing enough, or believing enough, because hey, it works for them, right?
The last thing we need is more pressure to fix ourselves! We don't need to feel as though we should be doing everything without help, That doctors aren't going to be acting in our best interests, that medications are bad.
Which is why, if you decide this is something you wish to try out for yourself, don't limit yourself in your treatment options. Some treatments work best combined with others! There is no reason why down the track you can't stop one or the other to try something else, or try one of your options solo. It is always easier to keep something under control than to get it under control. Why not start with your best foot forward. If medications are what is going to get you there, then why not use them to your advantage!
I just don't want people to feel that they are not doing enough to help themselves if they choose a Meds only route. Its what i'm doing, and many, many others do. And i'm pretty happy doing it!
If you are a diet maintained sufferer, props to you, 'cause you've got better will power than I! If you are meds only, Good for you! You're a different kind of strong, and I'm right there with you! And if you do both? You're probably the smartest of the bunch, cleaning the slate with the best of both worlds! I'm hoping to get there eventually.
If you have any comments or questions, as always, you can leave a comment down below, or write to me on Facebook. (link on the left).
Thanks so much for reading, and i'll see you again soon!!
Millz
xx
Sorry I've been AWOL over the weekend! We had a well earned night off from parenting on Saturday night, so we spent some time sleeping, went out for dinner and drinks with some friends, and generally relaxed! I even managed to get some art in!
So today I thought I would dive into the most frequently talked about treatment that I see alllllllllll over social media, and that is the clean eating, diet controlled - self-care option.
This is something I have mixed feeling about. As I've stated all along, I don't advocate for those who "push" treatments on people. I'm all for getting the information out there, but I'm not going to tell you what you should or shouldn't be doing.
I've come to the conclusion that most people who read this blog are adults. That makes you automatically able to take away from the crap I babble what you like.
I know we don't all agree on treatments, I know that we are all different, I know that we all believe in different things, have different ideas, and opinions, and that no two of us are affected exactly the same. This is something to always remember.
The Diet/ Naturopathic/ Holistic way of self-treatment is something that is very contentious, controversial, and has a strong following - Particularly on social media.
I'm going to start with my story, because, I want people to understand that it just isn't a suitable option for every case, and thats OK!
I mentioned in the FAQ last week, that this isn't something I would recommend for young kids, This is why.
When I was about 8 (ish) years old, my mum decided, under the coaxing of my Grandma from dads side, to try a Naturopath. So off we went. I sat in what looked like a doctors office, and she said to me that she was going to find my allergies by getting me to hold little glass vials, and she was going to "test" me to see if I had an allergy. This "Test" was done by making a ring with my thumb and index finger, and she should do the same from inside mine. If she could pull her fingers through and break mine apart - allergy. If she couldn't, no allergy. The vials were filled with different types of ingredients, things like wheat, sugar, dairy, metals, liquids, you name it. One by one she went through the many, many vials, and ticked off about every 2 out of 3 as an allergy.
I left that "doctor"s office with a list a foot long of what I wasn't allowed to eat, drink or touch. For an adult, this is a huge undertaking. For a kid? Damn near impossible. So here's my mum trying to convince me that rice cakes weren't that bad! You don't need bread! I got you some delicious Carob!! Just like chocolate! Yum Yum!
So here's the thing right. When you're a kid who has an Auto Immune disease, that presents VERY visually on your skin, you are treated differently, always. You are bullied and picked on for every distinguishable difference between you and them. I did my best to fit in, but ultimately accepted my differences. So when my diet was drastically restricted, it was just more to be picked on for. "Oh, now you can't even eat real food? Ya mums trying to starve you so you die and she won't have to worry anymore!" "HAHA look at her lunch! all she has is rice cakes and fruit!!"
This separated me from kids at school, again. I was excluded from parties because it's one thing to invite the kid that's different looking but otherwise the same, It was another to try and feed me at a party when every other kid is scoffing lollies, and cake and all the other good stuff at parties and I'm not supposed to eat any of it.
This went on for months and months until I couldn't deal with it anymore. Nothing was changing with my skin, it was still spreading and getting worse! I was also a very active, some would say hyper kid. This changed when the diet started because it's hard to be hyper when it feels like you're starving and have no energy.
I started stealing other kids food from their bags and sneaking away to eat it. I would beg to get other kids stuff they didn't want because I couldn't look at another rice cake! I even went to the teachers and told them I'd forgotten my lunch so they'd get me something from the canteen, even if it was just a cheese sandwich. I stopped eating anything mum sent to school with me. Didn't even look at it. Until mum started telling me off for not eating my lunch, so I still wouldn't look at it but would throw it away on my walk home from school. Then, I just kind of stopped eating. I didn't want it. Any of it. It was easier to go hungry because at least I knew I didn't have to eat the same crap all the time. This obviously alienated me even more, but I'm lucky that one of the people I stole from must have understood why, and actually became my best friend through primary and high school.
I used to hide honey under my bed to eat when no one was around. I would heap sugar into cereal when no one was watching. I even ate an entire bottle of orange flavored vitamins my sister had beside her bed one day because I thought they were lollies. Eventually mum gave up trying to enforce the diet, and we went back to Dr Derm. Soon after, was MTX, so as soon as I got my food back, I lost it again.
You see, my skin has never really been affected my food. Alcohol maybe, smoking definitely, but never really food. I was a kid, who was supposed to be growing, playing and learning. Food is vital to that, and living off a restricted diet at that age is just not something I would want to do to/for my child. While there may be benefits, I would rather wait until later in life when they can understand, and make the choice and commitment for themselves, because it is something that you really do get out what you put in. I was in no way prepared for that! I simply didn't have the desire to say no when the food I shouldn't have eaten was offered, because I still wanted it! I did not have the willpower of an adult. I did not have the coping mechanisms, self-restraint or self-discipline to stick to it. I was 8. All I wanted to do was eat junk, have fun and play, just like every other kid in the world.
As an adult this has HUGELY shaped my food preferences, lack of self control, affinity for unhealthy fast foods, and sweet tooth.
I only realize now, just how much.
We never really got alot of take away as a kid, fish and chips or pizza occasionally, Chinese food if it was a special occasion. As an adult, I have it frequently, but in my teens, after I moved out, it was as often as I could, sometimes daily. I've gotten better over the years, but we still eat it more crap than we should. I also hoard junk food, lollies and cereals. Because I was told I couldn't have it as a kid, now that I make my own decisions, I buy it every time we grocery shop. It's not because I want to eat it all the time, but because I like to know I can if I want to.
I'm now a qualified cook (which makes the amount of take away worse. :p)
I combined my knowledge and passion for food with my preference of working with my hands and started my own small business as a Professional Cake Decorator and Pastry Chef - Which is great as long as my skin and joints are under control, otherwise I don't take orders. Which is obviously a dubious and questionable career choice. Ironically, I don't even really eat what I make, not that big of a fan of cake! I just enjoy making them, and am always happy to see others enjoy it.
*insert shameless plug here*
I've had Psoriasis since I was 5 months old. Food wasn't a huge issue for me then, obviously. I've never in 26 years noticed that eating any food in particular, flared me, and removing most foods didn't help me. If you have, then controlling your skin with diet may be a great treatment option for you! I've found for people who have developed Psoriasis later in life, this can be a great option, as it is usually triggered by something in our lives at that time. For me, and many other life long sufferers, these options don't often provide us with relief. That's not to say you shouldn't try it for yourself, as everyone's results are different.
As I mentioned, it really is something that will reflect what you put into it. Some people go Gluten free, sugar-free, Vegan, Some cut dairy but eat meat, some just eat healthily, some eat one specific food only. I would advise seeking professional advice as to what is recommended for you personally. A qualified dietician or even your rheum/ derm should be able to tell what foods are likely making you worse and which will be in your best interests to keep, to give you a good starting point.
If your chosen trusted medical professional tells you that they wouldn't recommend using it as your sole approach to treatment, that does not mean you cannot still choose to amend your diet and still use the medications or treatment options recommended by your doctor! Eating healthier is always going to be good for you, whether you are on other medications/ treatments or not!
We as sufferers place a lot of pressure on ourselves to be "normal". We do the best that we can in our day to day lives not to struggle and need help. We often wait as long as possible to ask for help - be it to get off the couch, for relief from pain, for a new treatment, because we feel like a burden. We should be able to do it ourselves! Everyone else manages, why can't we!?
Something I've seen with this "diet only" movement is this super laid back, casual "well you can see it works for me!" evidence, and telling people if they change enough or give up enough or do enough, that they *can* and *should* fix themselves - with No nasty chemicals or side effects! That if they don't succeed, it's because they haven't done enough, and if they choose not to try this option or not to continue when they haven't seen improvement, it's because it's just too hard for them, and they are saying no despite evidence and proven results.
This has been one thing I take issue with. Telling people that it is the best way to treat themselves. For the influencers, in their experience, that may well be the case. But I worry that other sufferers will see them, and their results and advice and believe that that is the best or even only treatment that is available to them, putting themselves through unnecessary prolonged pain and suffering. If they don't achieve the same results? It must be their own fault for not doing enough, or believing enough, because hey, it works for them, right?
The last thing we need is more pressure to fix ourselves! We don't need to feel as though we should be doing everything without help, That doctors aren't going to be acting in our best interests, that medications are bad.
Which is why, if you decide this is something you wish to try out for yourself, don't limit yourself in your treatment options. Some treatments work best combined with others! There is no reason why down the track you can't stop one or the other to try something else, or try one of your options solo. It is always easier to keep something under control than to get it under control. Why not start with your best foot forward. If medications are what is going to get you there, then why not use them to your advantage!
I just don't want people to feel that they are not doing enough to help themselves if they choose a Meds only route. Its what i'm doing, and many, many others do. And i'm pretty happy doing it!
If you are a diet maintained sufferer, props to you, 'cause you've got better will power than I! If you are meds only, Good for you! You're a different kind of strong, and I'm right there with you! And if you do both? You're probably the smartest of the bunch, cleaning the slate with the best of both worlds! I'm hoping to get there eventually.
If you have any comments or questions, as always, you can leave a comment down below, or write to me on Facebook. (link on the left).
Thanks so much for reading, and i'll see you again soon!!
Millz
xx
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