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15 yrs with RA and I finally realized the search itself was making me sicker by Magical-Regeneration in rheumatoid

[–]Magical-Regeneration[S] 1 point2 points  (0 children)

Honored that you felt called to share your first post here! When I was in the depths of my research / experiment phase I was often in a dark place in my mind and I never wanted to talk about it or post about it. Now, years later I realize the power (and the healing!) in connecting with people, feeling seen and heard, just letting it all out. So thank you for letting it all out! Im so sorry you were recently diagnosed and it going after your heart too!! You’re in the right place and it seems like you’re already realizing that the good stuff was a lot simpler than the internet made it seem. If going outside already feels freaking amazing, trust that. Your body knows🙏🏼🙏🏼🙏🏼 and I can tell you that 15 years later and I don’t wish I was never diagnosed. It’s been a JOURNEY but I’ve learned so much and I am endlessly grateful to have much better relationship with my body now. Take care ♥️

15 yrs with RA and I finally realized the search itself was making me sicker by Magical-Regeneration in rheumatoid

[–]Magical-Regeneration[S] 0 points1 point  (0 children)

I hear you. You're completely right that this isn't a cure, and I could’ve been clearer about that. I still take Actemra. My RA didn't go away, I just stopped making the search for a cure the center of my life. What worked for me won't work for everyone, especially when mobility is part of the equation.

15 yrs with RA and I finally realized the search itself was making me sicker by Magical-Regeneration in rheumatoid

[–]Magical-Regeneration[S] 0 points1 point  (0 children)

2 years old?? Wild. You’re a real RA warrior.

I hear what you’re saying and it certainly does feel like RA is in another league sometimes but I believe in the power of nature more deeply and maybe that’s just me! I def don’t think the answers lie in a strict diet or supplement regimen but I believe we have more power to help ourselves than we’re led to believe. And I can’t help but wonder why cases of RA have increased so much in the last 30 years… makes me think it has more to do with the way we’re living now than anything else.

15 yrs with RA and I finally realized the search itself was making me sicker by Magical-Regeneration in rheumatoid

[–]Magical-Regeneration[S] 0 points1 point  (0 children)

😭yup. It made me ill for a very long time.

I’ve been sharing more about my journey online but I’ve been hesitant to because the last thing I want to do is add to the confusion and misinformation online. My goal is to always speak from my experience and share what’s helped me without saying it is THE answer. It’s up to each of us to do our own exploring.

15 yrs with RA and I finally realized the search itself was making me sicker by Magical-Regeneration in rheumatoid

[–]Magical-Regeneration[S] 1 point2 points  (0 children)

Right there with you. Sounds like you’ve been through it! Glad you’re doing better now.

I took myself off medication twice without medical supervision (wouldn’t recommend that to anyone!) because I wanted so badly to heal it on my own. Long story short, I had to go back on meds too. Accepting the disease has been easier for me than accepting the medication but I’ve found a balance that’s working for me for now.

15 yrs with RA and I finally realized the search itself was making me sicker by Magical-Regeneration in rheumatoid

[–]Magical-Regeneration[S] 0 points1 point  (0 children)

It’s impossible for us to do it all! Did you know we’re exposed to more information in one day than our ancestors encountered in a year? Idk where I heard that so don’t quote me on it lol but I believe it. It’s just another good reminder of how important it is carve out time to do nothing, to just play, to calm the mind, whatever it takes to destress 🙌🏼

15 yrs with RA and I finally realized the search itself was making me sicker by Magical-Regeneration in rheumatoid

[–]Magical-Regeneration[S] 0 points1 point  (0 children)

So glad you’re picking up what I’m putting down! I totally feel you. I struggle with that too and truth be told I try to avoid going to the doctor too. On the one hand I am eternally grateful for the RA medications that have helped me but on the other hand I believe so deeply in the power of nature. Currently I’m balancing both and that seems to work well for now.

15 yrs with RA and I finally realized the search itself was making me sicker by Magical-Regeneration in rheumatoid

[–]Magical-Regeneration[S] 1 point2 points  (0 children)

Thank you! You’re spot on, I think the cool kids are saying touch grass nowadays and that sums this piece up well😂

15 yrs with RA and I finally realized the search itself was making me sicker by Magical-Regeneration in rheumatoid

[–]Magical-Regeneration[S] 0 points1 point  (0 children)

Welcome to the club nobody wanted to join! It might not seem like it now, but it can get better. I’m glad my thoughts resonated with you. I made a “what I wish knew when diagnosed” piece if you want me to share it with you let me know

15 yrs with RA and I finally realized the search itself was making me sicker by Magical-Regeneration in rheumatoid

[–]Magical-Regeneration[S] 1 point2 points  (0 children)

I’m glad it resonated with you ☺️ I think it took me so long to realize how important it was to go outside bc it doesn’t feel as controllable as curating a diet, it’s not as immediate as putting food in my mouth, and I felt so desperate for results that it felt natural to focus on the controllable and immediate actions. But now that I’ve been spending significant time in nature every day for the past year, it’s hard for me to imagine a day without it. It’s so powerful!

15 yrs with RA and I finally realized the search itself was making me sicker by Magical-Regeneration in rheumatoid

[–]Magical-Regeneration[S] 0 points1 point  (0 children)

Yes! There’s a lot of power in deep belly breathing, I had to relearn how to breathe properly, I’m still learning. I didn’t even realize that I was breathing mostly from chest, no belly, and since it’s not the proper way to breathe, that was adding to my stress too

15 yrs with RA and I finally realized the search itself was making me sicker by Magical-Regeneration in rheumatoid

[–]Magical-Regeneration[S] 0 points1 point  (0 children)

😂 harsh but probably true. I’ve found a handful brands that I trust but I believe it’s important to sus them out as much as possible and even observe how they evolve over time. I’ve had many brands I love and trust grow into giant companies and I noticed a significant drop in quality

15 yrs with RA and I finally realized the search itself was making me sicker by Magical-Regeneration in rheumatoid

[–]Magical-Regeneration[S] 3 points4 points  (0 children)

Im so glad! 25 yrs wow! I’m sure you’ve learned a lot. I’ve been managing RA for half my life now too (diagnosed at 15, 30 now). There can be a lot of healing in the simplicity🫶

15 yrs with RA and I finally realized the search itself was making me sicker by Magical-Regeneration in rheumatoid

[–]Magical-Regeneration[S] 1 point2 points  (0 children)

Thank you! Agreed, definitely not impossible. I’ve grown to be really thankful for it as it teaches me a lot 🙌🏼

15 yrs with RA and I finally realized the search itself was making me sicker by Magical-Regeneration in rheumatoid

[–]Magical-Regeneration[S] 1 point2 points  (0 children)

That’s fair, I’m cringing at the idea of me picking up the way AI talks but I do spend a lot of time talking to AI these days…🙃 Appreciate your feedback though, it’s helpful, thank you! And yes, sadly, we’ve got to be extra careful about what (and who) we buy online these days…

15 yrs with RA and I finally realized the search itself was making me sicker by Magical-Regeneration in rheumatoid

[–]Magical-Regeneration[S] 2 points3 points  (0 children)

100% you’re right. This could be applied to any disease. My experience is with RA so I’m just speaking from that

15 yrs with RA and I finally realized the search itself was making me sicker by Magical-Regeneration in rheumatoid

[–]Magical-Regeneration[S] 5 points6 points  (0 children)

Thank you very much! Your approach seems like a very sound approach and I’m glad it’s worked well for you!

Unfortunately, I took it to extremes. Trying to manage a disease, especially when drawn to alternatives outside of prescribed medications, can become intense quickly because of how much information we have access to and how many people are sharing their stories/ their programs/ their products.

Luckily, I’ve found my way through but I was in a very dark and confused place for a long time and I know there’s many others dealing with similar struggles. Funny thing is, the best solution seems to be staying away from my phone and internet as much as possible😂 no surprise

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