Community – How can I contribute and what does the future look like?

We have things to figure out, like how do we increase awareness? How do more sick people find out about this and get better? How can we test more foods or make it easier for new people to start? How can I support the cause or help out?

Intro and background: 0:00
What are our needs and questions: 4:27
Build a non-profit: 7:08
Find researchers and apply for grants 11:02
Me and Low-sal-life channel: 13:35
Commercial testing ?? 20:48
What you can do! 23:14

Transcript

Provided for visual learners, improved accessibility, and for translating the page

Intro and background: 0:00

Hello, my name is Sarah, welcome to Low-Sal-Life. Today we are going to talk about a couple of things, mostly where I see the low salicylate community going in the future. And what our role is – both my role as somebody who’s making content and educational materials for people with salicylate sensitivity, and then also what your role is. So, stick around to the end, we’re going to go backward, chronologically. So, we will start with my vision in five years, and go from there. So, if you’re new here or new to the salicylate sensitivity group. We are sensitive to salicylates or aspirin compounds, it is not fun, because we can’t eat very many things. And most of us are also sensitive to absorbing it on our skin through cosmetics, or also inhaling it through fragrances or chemicals and cleaners and that kind of thing. So, it makes life a little bit challenging. And people have been treated or have known about this for decades.

One of the most important studies came out in 1985 by Anne Swain and her colleagues, which measured the levels of salicylates that occur naturally in food. So mostly they’re they tend to run high in fruits and vegetables, oils, spices, and mint, a lot of manufactured chemicals and fragrances. So, it makes things challenging. So, my channel, you can check out my website, low-sal-life.com. I found that I’m salicylate sensitive about three or four years ago. And it’s made a world of difference in my health before I just had all sorts of weird stomach problems, migraines. I have a muscle disorder called dystonia, has come into remission since switching my diet. And I am doing so much better health-wise since switching my diet. And if I would have known, I could have been much healthier for a long time. And I think that the reason why I think that I’ve been salicylate sensitive for a long time, like my whole life, like since I was a baby. So, I think that there is a lot of evidence to support that idea. And my mom was also salicylate sensitive. So, you know, things. It is a weird place to know that you have this and to go to your doctor and they don’t know what you’re talking about and can’t even pronounce the word. It is a little concerning. That is not the case in all countries, the UK and Australia tend to have some of the most awareness around it, and clinics and doctors who specialize in salicylate sensitivity. In the US, you’re kind of left up to working with naturopathic doctors, or nutritionists or dietitians that might be educated in it. But you the Medical Association doesn’t acknowledge it as an actual condition, which is really concerning, they will acknowledge that you could have aspirin sensitivity or casually called aspirin allergy. So, that’s an issue. So, let’s talk about community and where are we all fit in this because it is a rare condition, meaning that nobody believes in it here in the US just like climate change and you know other things. It makes it really challenging to also find other people or find support groups or that kind of thing and find those doctors that are educated in it and find researchers who are working in it. So, my background is, I have a degree in biology. I am a plant nerd. And so actually study plants even though they have salicylates in them, it was kind of you know, I started with plants and then found out about salicylate sensitivity later. So, the two kind of think it would pick a different career path if I was interested, if I had known but when you can do. Alright, so the question is

What are our needs and questions: 4:27

What would we need it from community or what could a community provide to us that would benefit us? So, some of the things include, how do people get diagnosed, you know, that are sick and don’t know that they’re salicylate sensitive? So, one of that is educated doctors and researchers. And then also people talking about it and spreading the word. That’s basically how gluten intolerance sensitivity you know, spread outside of celiac. So, you know, how do we get diagnosed? The second thing is how, you know, what foods can we eat, the food lists are terrible, there’s not a single food in the US that’s been tested. So, you know, we’re kind of out on our own here. And there’s a lot of discrepancies. And of course, food manufacturing practices change, depending on what country you live in too. So that’s a thing, or what varieties of plants are being made. So, you know, what foods are safe to eat?  Another thing that we want to know is how did we get this? Like, what’s the problem? What caused it? Is it genetic is a, you know, there’s some dust mite allergy theories, there is, you know, mold exposure, chemical exposure, you have heavy metal damage, you have, you know, a sick liver, you know, there are so many different theories. I think that there could be several contributing factors. But we’re not on the… We’re not here to talk about that right now. Basically, how did it happen? And then, of course, usually, if you can figure out the how to happen, the other question is, how do you treat it? So, what can we do to either reduce our reactions? Or what can we do to get rid of this or cure ourselves? So those are the four main things that we want to ask. And this was about community too. So, we’ll say, you know, how do we meet and find other people that are like us? How do we, you know, swap information, how do we, you know, nurture and build each other up. So, those are the five needs, I feel like are the biggest things that we need to address as a community, and you’re here on this channel watching and listening. you’re emailing me, you’re contributing, you know, so that is so awesome. And I can’t wait until we get a good group of people in the future, and that this ball starts rolling.

Build a non-profit: 7:08

So, let’s start at the very back side, like where I see us going and what’s possible. One thing so I’ve had dystonia muscular, Levodopa-Responsive Dystonia for about 15 years. My dad also has Parkinson’s, it’s been about 15 years into it, we got MRIs in the same month, Ah good times. So, and we take the same medicine or I don’t take medicine anymore, but I did. I took levodopa before probably about eight years, anyway, probably about 10 years. So, one thing about both dystonia and Parkinson’s that I’ve noticed that the salicylate group doesn’t have, they have research, doctors, and of course, approved by medical associations, because these are actual real conditions, and they have nonprofit organizations surround, you know, working on these problems for us. They’re the Watchdogs. They’re the ones generating a lot of interest, education and research around their conditions. And the salicylate community doesn’t have that. I would love to see in five years a nonprofit for salicylate sensitivity be started. I don’t want it to be, you know, specifically for fibromyalgia or specifically for you know, leaky gut syndrome or for salicylate people with dust mite allergy or people that have anemia and so low sal diet helps. I want this to be about education. They can bring in dollars, they can do fundraising, and with those, they can work on educating the public, educating doctors, finding researchers and funding them with paid grants. That’s how we get our food lists people is getting researchers and paying them to test our food. So, I imagine that a salicylate sensitivity nonprofit organization needs to happen in our future if we want to unite as one group of people worldwide to make that happen. I think it’d be amazing if it happened in the US since there’s so much work that needs to be done here for education. I would really like to see that happen. I am not in the business of nonprofit organizations. I do a substantial amount of nonprofit work with the Plant Society here in Washington State. And it’s great, it’s very enjoyable. I love contributing my web skills and design skills to that organization, but I love to start a project and finish it and not work with the board and not work with the committee and things like that. And that’s just my personality. I’m very introverted, I want to be behind the scenes and work on things.

So, I don’t think that I’m the one that needs to start this nonprofit. I’m just saying that in the masses of 1000s and 1000s of people worldwide, that hopefully we can unite some of these people that are really passionate about it, or have some talent, I have talent, I can bring talent, and start a nonprofit. Those are my thoughts. Let me know what you think. I will make a page on my website where, you know, maybe I’ll figure out how to get comments on there. So, people can contribute, and say if they think it’s a good idea, or a bad idea, or you know how we’re going to start this. So, if you’re into building nonprofits, I would love to be on the board. But that’s probably about my contribution, I can probably build a website too.

Find researchers and apply for grants 11:02

In conjunction with that, but this can start before a nonprofit, we’re on the second item in conjunction, or slightly before, we need to get researchers paid to do work on this. So, all of the clinical trials that I’ve seen for salicylate sensitivity, again, anything that I find I put on low-sal-life.com/research. Those are all the research articles related to this, that I find original research. We need to pay people to do this research. Now I work in a university and work with the research grant process. I don’t actually do research, I help with the administrative work of it, and helping with program management and that kind of thing. It’s hard to apply for a grant in the United States and say, hey, let’s test all of these foods for people who are salicylates sensitive, when the Medical Association doesn’t believe that salicylate sensitivities a thing. Right. So, money isn’t going to be funneled into something that’s not thing. So that makes it really hard in the US. And I think that’s the biggest reason why funding has happened in other places like the UK and Australia and Poland. And I just think I’ve seen Germany. So, it’d be really nice to find some chemists, food chemists, biologists, microbiologist, you know, anybody in that field that is interested in passionate about doing research, that we you know, we can somehow find them, if they’re passionate about it, they can write it, write the grant and get funded for it. But basically, I think that’s reason why nonprofit work and fundraising would be beneficial. Anyway, I think those two go hand in hand. But we could always, you know, I don’t know, I don’t know how we find money to pay for researchers, it’d be really great. I did try and track down some researchers to see if I could collaborate with them. Like I said, I am a biologist. So, I have some pretty basic fundamentals, I’d be happy to write the grant. But haven’t really found anybody to work with on that. So that is another need.

Me and Low-sal-life channel: 13:35

So, backing up a little bit. The third thing is – me and my place for this community and how we can get to the next two steps. Obviously, I have a website that I built that is my skill is building websites, making them look pretty, you know, it’s very relaxing to me, for the most part. And I’ve really done this, because I was so sick for so long. I don’t want other people to suffer the way that I had. And I love reading those little comments that was like, I you know, I’ve been to the hospital 10 times for anaphylaxis, isn’t the first time anybody ever said that I could be reacting to food in addition to aspirin, you know, like, those things are so important. Or I have a child and we change the diet and their behavior so much better. You know, they’re not banging your head into a wall anymore. That makes me happy. And so that’s the main reason why I started this and also to generate and collect my thoughts so they’re all in one place. So that is my role for the community is providing this space for you guys to come. And you know become educated, look at the real research, be able to take those research articles to your doctors and educate them. I mean, you might not go back after that. But, you know, I keep up these conversations. And I’m not rich, I work full time, this is a side gig for me, like, you know, sometimes I have to take a little bit of a break and balance out other portions of my life. But I do have a monetization plan. And I wanted to bring this up today, because in the last three weeks, it came to my attention that there’s YouTube ads on my YouTube videos.

Now, some of you guys might have thought, wow, she’s made it she’s monetizing, and making money off the videos that she made so that she can funnel that can either pay for her student loans or put more money into the low salicylate community and education. That is not the case, I have to have 1000 subscribers to monetize. And YouTube has changed their policies where they can monetize on my videos, even on my content, and not pay me. So, until I get to that 1000 subscriber mark, I’m not able to do that I have no control over the ads. Once I get to that monetization level, just to let you guys know, like, if I have control over like not having food ads, or not having febreeze or perfume ads, or political ads, like I would prefer to make that a possibility. I don’t want you guys to watch a video on like, Big Mac hamburgers, if you guys are not able to eat yellow cheese, or tartar sauce or pickles. Right. So, you know, those are things that concern me, I have no control over that. And it’s really frustrating. But the goal is basically in a year, the website cost me about $500 to run, that doesn’t include my time or labor or the time and labor that I put into the videos on the weekends. And so, if you want to support my channel, there are a couple of ways that you can. One is subscribe, once I get to that 1000 Viewer Mark, I can monetize and make a few ads, a few dollars off the AdSense and then I also have control over the small control over which ads can be played. So, subscribe that it’s very helpful. I do have really good watch times you guys hang in there through my extremely long videos, I appreciate it. And so, the watch time shouldn’t be an issue for me to me. The second way that you can contribute to the channel is through purchasing off of my links, I do have Amazon links set up in the directory. And that helps. I mean, so far I’ve made 64 cents in like three months. But if you purchase, if you know that you need to buy, you know clear mascara, which I put up today, you can purchase through that Amazon link, you just click on it and you just purchased it through Amazon. This works in the US only right now, I don’t think I’m going to set up the other countries right away. What that does is you pay normal price. And then Amazon will give me I think it’s 1% on most of the food and beauty products that are on there. So, you know enough of you guys do that. That’s a big help. One thing that Amazon does that is very generous is not just on those items that I list. So, one of the purchases I saw and I know I don’t have this on my list. Somebody went in and looked at who knows what, a deodorant and they ended up buying peanut butter. Now, that peanut butter purchase even though they bought something else, I still got a little bit of a percentage off of that. And so that is also helpful, so if you know you have an Amazon purchase and you want to support me in the channel and help contribute in that way, even if you’re buying something like a record player, or you know lawn furniture or something like that off of Amazon, and you go through and click on you know, a soap from Amazon and then at the same time, you know don’t get the soap but buy something else that also contributes to some income for this channel. And the last thing is I did sign up for ‘buy me a coffee’. So, a lot of you guys have asked how you can contribute to me. And you know, I appreciate it! Basically, you know I have bills and student loans I work full time at a State position. Let me tell you it’s not a ton of money. So anything that, you know, you contribute to me is helpful, I basically have a three way plan, all the profits that I get a third goes to taxes a third goes to like student loans or me personally, and then a third goes back into the channel. And to keep things going, that’s after like the websites paid for and you know, fees, and different things that are paid for.

So, what that means is, if I feel like trying out a cashew butter and being your own human puppet tester, I can buy that cashew butter, you know, off Amazon or eBay or something, and give it a try and let you guys know what I think. So, it does help me test.

Commercial testing ?? 20:48

There’s also one other thing that I am working on. And I’m just going to bring this up, I promise nothing. I used to work at a food lab, I did purchasing and business work for a food lab that was international. And the other day I was thinking, you know, they tested so many things. They mostly did microbiology and in protein for allergies. I was in charge of the allergy kits because I was the most educated person on allergy person there, but I started thinking, you know, they actually test for a lot of other chemicals. And while they’re not able to help us with testing salicylates, I did contact a colleague, and she recommended two labs. So, I’ve reached out to them. And they’re also very large international labs, and they do different chemical and cosmetic testing. So, I am wondering if we can do our own commercial testing for salicylates? I mean, how much are we willing to pay to find out if jojoba oil, I don’t know how you pronounce it, or, you know, a certain type of MCT oil is safe? Or if the Cleure shampoo conditioner and with coconut products is actually salicylate free, what didn’t you want to know that? I want to know that. So, I mean, if the tests are like $300 Each, I think we could probably get back together, I mean, if they’re $600. I think that’s reasonable. I’ve looked into the process, even if I bought the equipment myself, it would be about 10 – $15,000. That doesn’t include the electrical upgrades I would have to make to my house. Or if I’m even legally able to have the chemicals in my house. I don’t know if that’s allowed or not. And how do I get the chemicals here, I live in a very rural area. So basically, if I were to do the testing myself, it would probably be a minimum of $20,000. So a test of $600 for a company to test it for us that, you know, that might be not terrible idea, at least to get us until we’re at that nonprofit. You know, having research money for research-level, like that would be really great.

What you can do! 23:14

Okay, and the fourth thing about this, like community is obviously, and so the question is, I had this question from several people, how can I help now? What can I do now, like, I work full-time, I’m a parent, and I have a few hours a week, or you know, that kind of thing. Some of the biggest ways that you can help and you can certainly help me and I can help you to is sharing your knowledge as far as what you can eat and what you can use and how you manage this. The way that I built the website is that it has like every directory product and every recipe has a place for you guys to log in and rate them and I’ll do a whole video on how to but basically, if I put up my Hemp Organics lipstick, which a lot of people use, I use it I don’t have a problem with it. It has both hemp oil and castor oil. Those are kind of controversial as far as salicylate sensitivity goes. But a lot of salicylate sensitive people do really well with it. So rather than going on a forum and 500 people arguing about how it’s bad or not bad and how is like oh I can use, no I can’t use it. The rating system allows you to go in and say I really like this product and never had a reaction to it. I am salicylate sensitive and amine sensitive and it works great for me. I love this color. Right. so, you can’t go in and rate it and your knowledge and expertise with you dealing with you and you being you know, one person of many that really, really helps, you know, it’s really trendy to find things with, you know, like, fluoride toothpaste has been on my mind, you know, like, is fluoride bad for you? Like, I don’t want to get into that. But if people are like; Hey, I found this fluoride toothpaste and it works great. You know, it’s got some questionable components like vague components, right? But it works great.

So, like in that case, we want to know, is there 300 People with salicylate sensitivity that are able to handle this, we want to know that and if you have tried it, and it works terrible, you would put a one on there. And if it works great, you would put a five on there. And then people can go in and say; Oh, look, there’s 300 People that have graded this, rated these items. And it looks like it’s a 4.5, which means that it’s both a good product and that they didn’t react to it. So that is one way that you can contribute. The recipes – I am like a 15 minute and under kind of cook. And so, I don’t always and I’m very simple. And I’m okay with routine. So, filling out the recipe section isn’t my strength. I’ve created the recipe section, that is my strength, but actually taking pictures and trying new recipes. I don’t really care about that so much. I mean, sometimes it’s fun, sometimes I get hungry. But you know, what, what do you do when you have a seven-year-old who doesn’t want to eat something and you have to be creative and you know, make, you know, owl pancakes or something like that. Like that’s what we need. And that’s, that’s what your expertise is. Also, like, I don’t have kids. And obviously, I’m middle aged. And you know, I don’t fit along categories. I’m not a parent. I’m not a child. I’m not old person. Like I don’t know, like my dad, you know, have to get, you know denture cream. Is there a concern with denture cream and salicylates? Is there an issue or concern with diaper cream? And salicylates? I don’t know which, you know, somebody asked me like, my kid has a rash. Like what can I use? I have no idea. That’s what your experience is. And that’s your contribution to the community is helping new people who are coming into this feel welcome, feel comfortable, and have a really good set of resources for both finding products that you can use having a good list, that you know, that food list, that’s my contribution, right? You know, if you guys can contribute products and recipes for those new people, so they feel comfortable, and that it seems achievable, and they’re not limited to baking soda for the dental needs, right like that is where we start as a community member. There’s other ways to the forums are okay, I am not a forum gal. I like Facebook groups is a place where I go to die. There’s just so much back and forth. And it’s like, well, this works for me, oh, this is terrible. You know, like, that’s not my favorite place. And, you know, if you are gifted and enjoy those places, continue to educate. And, you know, broaden people’s horizons in those forums. I know that there is a lot of good information in there. And my heart goes out to people who are moderators. The last thing, of course, is to continue talking about it and educating people and educating your doctors. So that’s the reason why that research page is available so that you can link to it and find information. And that’s the reason why I’ll continue to do videos on research and show you what is good about those articles and what’s bad so that you can have an educated so that you can be educated when you go and talk to your doctors.

So anyway, I think that’s it. Thank you for hanging in there. I’m sorry. I’ve been gone. I’ve had some, some family stuff to work with. My mom passed away in October. And so, we’re now dealing with, you know, my brother and I have new roles, right? My dad has Parkinson’s and, you know, we got to take care of her belongings and we have to file their taxes and, you know, fun stuff like that. So, I’ve just needed a little bit of time for myself. And I’ll be back on here. I’ll keep on going. So anyway, I hope you feel encouraged and have some ideas about where I’m going with this and why I’m passionate about it. I hope you have a wonderful day. You can find me on Instagram, or Facebook at low-sal-life or you can contact me through my form on low-sal-life.com/about. I think that’s all I’ve got for today. Take Care! See you guys later – bye!

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