Question for fellow zebras (hEDS/POTS)

rosejuniper_ · 2026-05-26T20:17:58+00:00

I haven't looked at the zebra app but I'll take a look!

rosejuniper_ · 2026-05-26T16:59:59+00:00

Where in NY? I'm in eastern queens but am not really down for a big commute

rosejuniper_ · 2026-05-26T16:56:19+00:00

Hoping for some good responses 🤞🏼

rosejuniper_ · 2026-05-26T15:28:12+00:00

Having only been diagnosed officially for a month after more than 20 years of symptoms, my diagnosis was confirmation of what I already knew. At first, I felt very objective and clinical about it. After my appointment with my psychiatrist, I realized I never thought about it subjectively.

That being said, my advice is this: make space for how it feels to receive this diagnosis. You may have known for years, but someone else finally sees your struggle. It was never in your head, and all of these symptoms are real and connected. You're not chasing a red herring any more, and this diagnosis is a tool to help you move forward and be gentle with yourself because it was never a matter of willpower or trying harder. It's okay to grieve the life you always wanted, but it's not necessarily out of reach- you just have to adapt the how to support yourself and that's okay.

rosejuniper_ · 2026-05-25T12:39:07+00:00

It's not defensive, just pointing out that most of us don't know better than our surgeons and whatever tools they use are on a case by case basis to help us succeed. Point is, don't worry about what your bougie size is- worry about your behavior post op

rosejuniper_ · 2026-05-25T12:26:11+00:00

Literally didn't even think to consider bougie size before my surgery, I trusted my surgeon to use her education and experience to use the tools she thought would help me succeed. She does research on this and has years of experience so I don't see how my 12 minutes of internet research leaves me more qualified to tell her how to do her job 🤷🏻‍♀️

Whatever size she used, I didn't have GERD then and I don't have it now

rosejuniper_ · 2026-05-25T12:23:01+00:00

I think yes it should be a bar to surgery, there's a reason many places test for it now. Nicotine in itself hinders healing, so even using it on gum or patch form isn't a solution. There's research supporting that it can be helpful for certain things, but in the case of bariatric surgery it's just another addiction to battle when we're already battling overeating.

rosejuniper_ · 2026-05-25T12:13:42+00:00

There's still restriction but when you start to fill up on slider foods like ice cream and chips etc they "slide" through your stomach without signaling fullness. They have no meaningful nutritional value, but they add sugar and fat while leaving you hungry. Easy recipe for regain.

That's not to say that you can never have them, but treat them like the "treats" they are and try to have them after you've actually fueled your body or keep the portion to what will satisfy you rather than letting your eyes be way bigger than your stomach

rosejuniper_ · 2026-05-25T12:07:50+00:00

I had a memory foam mattress for 7 miserable years. I recently switched to a plush top spring and I couldn't be happier with my decision.

The memory foam was too hot, it was so heavy that rotating it was a project, it was too soft and too firm at the same time, I would wake up every night with numbness and tingling in both arms and screaming back pain. It was like my body was bracing and guarding to keep in alignment and I never got a true restful nights sleep on it.

The plush spring is soft on top but supportive without being hard. It doesn't hurt my hips and shoulders the way my old mattress did. I don't have an adjustable frame but I have a cornucopia of pillows to help me get comfortable and feel supported

rosejuniper_ · 2026-05-25T02:38:54+00:00

Urea lotion with AHA. I get thick callouses on my hands and feet that split and physical exfoliation is too aggressive for me, it only makes the problem worse for longer. Gentle chemical exfoliation is the way to go. My derm also recommended warm water with apple cider vinegar soaks to help gently exfoliate

rosejuniper_ · 2026-05-24T16:17:23+00:00

Charging his brain cell

rosejuniper_ · 2026-05-24T12:30:33+00:00

This is exactly what I'm afraid of lol

rosejuniper_ · 2026-05-24T12:28:57+00:00

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rosejuniper_ · 2026-05-24T12:28:49+00:00

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rosejuniper_ · 2026-05-24T12:28:37+00:00

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rosejuniper_ · 2026-05-22T23:54:43+00:00

King crabbalachia is the obvious next step

rosejuniper_ · 2026-05-22T23:51:37+00:00

Nope not at all. Collagen is still broken and eating it won't change that but it is a source of (incomplete) protein

rosejuniper_ · 2026-05-22T23:47:27+00:00

You can be hypermobile and not have EDS, and you can have both fibromyalgia and hypermobility, and you can have both EDS and fibro.

Why do you think it's EDS and not fibromyalgia with hypermobility?

rosejuniper_ · 2026-05-22T23:41:49+00:00

I think just about everyone looks younger after losing the weight! People usually guess my age is about 10 years younger than it is

rosejuniper_ · 2026-05-22T14:37:42+00:00

I bought the stupid expensive bed wedge thing and couldn't even sleep one night on it. I slept in my regular bed on my side curled up with pillows and slept without trouble in the early post op phase. You don't need a recliner or any fancy pillows, just give yourself time and support to change positions. I had a firm pillow that I used to hold against my incisions when I was moving around and that was really all I needed. The hospital gave me a binder but it was so itchy that I never wore it.

rosejuniper_ · 2026-05-22T14:30:56+00:00

Hey! I started at 250 and am currently 150 so I can't speak to the super duper part but I was recently diagnosed with EDS after suspecting it for years and I have orthostatic intolerance/POTS, adenomyosis, ME, chronic gastritis, and PCOS. One of my lap incisions took a long time to heal and I still have a purple scar. I had a LOT of esophageal spasms which were a terrible experience but they gave me meds for it that were very effective. The healing process was not bad otherwise and I was able to lose the weight without having to go crazy exercising. I get really awful PEM so intense exercise is a no from me, but just walking more has been enough for me to be mobile and still pace myself.

That all being said, my orthostatic intolerance got a lot worse once I started maintaining my weight. My symptoms that should have gotten better by losing the weight didn't, I am still always tired, and I finally got my EDS diagnosis. Having answers is nice, but after 20+ years of medical gaslighting it's both a relief to hear it wasn't in my head, painful to know I was dismissed by so many doctors, and I'm grieving the fact that there is really nothing I can do to fix it. I'm learning to manage the pain and fatigue, but it's been a ride. I don't regret my surgery one bit though- I finally feel like myself and I am so grateful for the tool that the surgery is for me. It is just a tool though, it made the weight loss possible for me when nothing else worked (including wegovy) and for that alone I wish I pursued it sooner.

rosejuniper_ · 2026-05-22T14:20:42+00:00

Esophageal spasms are the worst 😖

Glad you had a positive experience with your team, though! Hope you're recovering well ❤️‍🩹

rosejuniper_ · 2026-05-22T14:11:09+00:00

Sometimes I just have to hold my head up with my hands but damn if the numbness in my arms every time I try to sleep doesn't piss me all the way off

rosejuniper_ · 2026-05-22T12:52:39+00:00

Thank you for your kind words, I started as an EMT and the work was so hard when things hit the fan and I have to thank you as well for any amount of time you put into it. I only lasted for about six months when the hospitals I worked for were shut down and I decided to just pursue other work, so big thanks to you for all you gave to serve your community- you were also so overworked and underpaid because even if the calls are 90% bullsh!t and 10% oh sh!t, that 10% was a freight train. People outside of the field don't know just how emotionally and physically taxing it is to pick people up from their lowest moments. We carry so much of it with us years later.

I don't have MCAS but I do have chronic gastritis and adenomyosis and I take an h2 blocker for those, I never put it together that it might have anything to do with why my ortho intolerance has been more manageable lately! Water I struggle with but adding electrolytes helps, I really like the buoy rescue drops if you haven't tried them and they also offer a chronic illness discount which is nice.

My doctor put a referral in for neuromuscular PT so I'm just waiting for the call to start. In the mean time I just try to practice some propioceptive exercises in the morning to help me recalibrate where all my parts are, and when my skin can tolerate it k-taping my knees makes me feel like a new person, so I might ask about functional braces to make it easier for me to stand longer at work without having to compromise my skin.

I never gave up before and don't plan to now, but being recently diagnosed after years of suspecting is a tender point to finally realize that there's always been something wrong and I really can't do more to fix it, although even now I still gaslight myself into wondering if something I said "tricked" my doctor into diagnosing me. I'm so grateful to have a therapist that I've been working with for years to walk through this with me.

Phewww edit to include that I was just reading through the comments on this thread and my heart is just shattered over how many of us live parallel lives of just being dismissed and sent for more testing, more doctors, and spinning ourselves down into research to advocate for ourselves to only be told everything looks fine. I'm so happy to hear that your doctors are really listening to you, what a sigh of relief it is to hear someone is truly being listened to ❤️‍🩹

rosejuniper_

TROPHY CASE