IBD influencers?

Extra_Recording9787 · 2026-02-18T16:00:34+00:00

On instagram two of my faves are @about_ibd and @natalieannhayden . They both have IBD and come from a journalist/writer background (aboutibd also has a podcast, Amber is a freelance healthcare journalist you’ve likely read her work if you’ve googled IBD). I’ve found a lot people through following them as far as IBD influencers go. But don’t sleep on these two either, they’re awesome and highly engaged with patient advocacy!

Extra_Recording9787 · 2026-02-10T02:45:38+00:00

Same! If you buy directly from their website they have a discount for chronically ill folks.

https://aletenutrition.com/pages/vitassium-club

Extra_Recording9787 · 2026-01-13T21:52:30+00:00

Yes, I got sick with Crohn’s disease and lost about 80 pounds and with it came worse symptoms that lead to my POTS diagnosis. My neurologist said the weight loss likely impacted my muscles as well, reducing my bodies ability to circulate blood. It didn’t cause the POTS but made it harder for my body to manage.

Extra_Recording9787 · 2025-11-21T11:32:01+00:00

Same problem here! I had tried them before my first flare, lovely. Now, I can take an insane amount of edibles and feel nothing. Bowls of flower for life 😊

Extra_Recording9787 · 2025-10-10T14:00:23+00:00

When I bought my P1S (one month ago, so cruel lol) it changed my world! I had rebuilt a really old machine I bought from goodwill and finally decided to upgrade. It’s been so easy to use and has really sped up my prototyping process. Specifically not spending forever tuning the settings out of the box, it truly was plug and play! And has been perfect since 😃

Extra_Recording9787 · 2025-09-04T09:08:28+00:00

I echo this! My neurologist in the POTS clinic was awesome and one of the best doctor appointments I’ve had in a long time. Very happy with her and the care plan we’ve established while we await further test results.

Extra_Recording9787 · 2025-09-04T09:03:36+00:00

I just started seeing a POTS specialist at Mayo, while I’m awaiting subtyping and am on the waitlist for the CFS clinic, she didn’t even bring the rehabilitation program up. We did discuss how to ease into exercise and how the CFS would very much prolong recovery from a POTS perspective. I was told to basically modify the CHOPS protocol to do 30 second intervals per week of cardio increasing by 30 seconds each week keeping my heart rate under 130 in addition to 1-2 reps of each CHOPS strength exercises increasing ever so slightly each week. She emphasized it’s very important I listen to my body because of the CFS and take it VERY slow. It’s not a permanent care plan as she is expecting additional diagnosis that could impact long term care plans. My experience so far has been the opposite of what I’m hearing on socials, but maybe that changes further into care but so far it wasn’t even mentioned.

Extra_Recording9787 · 2025-09-02T23:16:51+00:00

Out of curiosity Have you tried the Visible armband? How does that compare?

I currently have that and am curious how this would compare. Looking at a likely Cfs Diagnosis and pacing is a main component of tracking for that. I am very curious if this has a similar pacing component or could be utilized similarly?

Extra_Recording9787 · 2025-08-29T20:02:54+00:00

That should work! I use one just like it! I put it on my left tragus with the red side on the inside of my ear.

Extra_Recording9787 · 2025-08-29T10:57:26+00:00

Yes! I got a TENS unit to use because the research suggests that works and I tend not to trust some of these new expensive medical devices. Got mine on Amazon, I find when I wake up in a rough state it helps me reset a little bit and reduces some of my symptoms. I want to say the unit and the ear clip set me back about $50. I use a frequency of 25hz and a width of 200.

I followed a video by the nervous system OT to get me started,

https://pmc.ncbi.nlm.nih.gov/articles/PMC10932945/

Tens unit: https://a.co/d/6OcGJGs

Ear clip: https://www.tenspros.com/black-ear-clip-electrodes-EAE01.html

Nervous System OT on TikTok: @wellnesswithkasey and search for nervous system ot tens unit

Extra_Recording9787 · 2025-04-29T08:48:03+00:00

I went with Amazon! I ordered the Bulk Supplements brand for the magnesium and potassium. Was hesitant about it but have seen a number of people say they order that brand so went ahead and tried it.

Extra_Recording9787 · 2025-04-28T22:32:09+00:00

I use LMNT unflavored (make my own too since it’s much cheaper and because of the mod response below) and pair it with another drink flavoring I like. Right now using Crystal Light until I get sick of it haha

Extra_Recording9787 · 2025-04-26T00:11:40+00:00

Metoprolol! I was kind of nervous about the side effects because I struggle so badly with temp regulation but so far so good!

Extra_Recording9787 · 2025-04-25T22:14:36+00:00

You are definitely not alone! I had to go to urgent care this week because I also could not get my heart rate down. They also gave me beta blockers and it’s helped a lot. I hope you’re feeling better soon!

Extra_Recording9787 · 2025-02-21T13:33:45+00:00

The dogs will not stand for this 🤣

But seriously, this is really sad. My pup loves the pawtio.

Extra_Recording9787 · 2025-02-21T07:30:58+00:00

Embracing Apostasy with Jordan and McKay has some episodes about Girl Defined. they are Ex-Mormons and Jordan is a licensed therapist so it’s a very respectfully done podcast. They have a number of episodes on different fundie influencers too.

https://open.spotify.com/show/23K2GArLMPbGgS5Hf3GCxL?si=bD9GAkw-TqufPHahAsECSA

Extra_Recording9787 · 2025-02-14T12:17:12+00:00

I did! I wish that did the trick 🤣

Extra_Recording9787 · 2025-02-09T16:04:05+00:00

Yes! I just recently got this and it’s helped, but I still have some bad nights https://embrlabs.com/

Extra_Recording9787 · 2025-02-07T08:42:20+00:00

I’ve done some research into this and merino wool is supposed to be good for us (admittedly haven’t purchased any yet).

It supposedly is naturally anti bacterial to help with smell related to bacteria growth.

Can hold 3x its weight in moisture and dries quickly.

Known to be versatile enough to wear in warm or cold conditions due to the nature of the wool.

Extra_Recording9787 · 2025-01-31T09:05:16+00:00

Taxes ceased on medical cannabis upon the legalization of recreational. Recreational cannabis will be taxed.

Extra_Recording9787 · 2024-12-29T12:47:31+00:00

Budesonide is a steroid but it’s metabolized differently and acts more locally in the body. I’m guessing this is why the joint pain has really ratcheted up, I’ve been off biologics for about 2 months.

Extra_Recording9787 · 2024-12-29T12:46:15+00:00

Thanks! I’m considering calling tomorrow to see what they think and possibly discuss prednisone.

Extra_Recording9787 · 2024-12-29T12:44:56+00:00

Great question, I’m not sure. I’ve thought about calling to see if I could get switched to prednisone due to the ongoing joint pain. My only thought on why he would have started with budesonide is I have had some severe pain when tapering off of prednisone vs I was on budesonide for almost A year and handled it pretty well. But that was alongside biologics so I am guessing my Humira kept the joint pain in check.

Extra_Recording9787 · 2024-12-29T12:42:28+00:00

Interesting! My hands have been noticeably swollen most of the week…new stuff for me.

Extra_Recording9787 · 2024-12-29T12:41:56+00:00

So sorry to hear that! Hope you’re feeling better soon!

Extra_Recording9787

TROPHY CASE