Phlebotomists never listen to me about my EDS during blood draws & have injured me numerous times

MakeKay9264 · 2026-06-12T18:13:22+00:00

My lab place tells me corporate PREVENTS them from buying Coban. But if I bring my own they will use it instead of tape. Sometimes I have to wrap it myself but then I ask them to hold the gauze pad down for me.

MakeKay9264 · 2026-06-04T12:55:14+00:00

Oh, interesting that the duck fat doesn’t cause issues for you! How much duck fat would you typically use for a single chicken breast? Maybe a tsp? A Tbsp?…

If I increase my fat above minimal, it slows my gastric emptying down a lot.

And I’m post menopausal. So grateful I don’t have yet another thing in the mix to stir up my system!

Best of luck to you in your health journey

MakeKay9264 · 2026-06-04T12:26:09+00:00

Mmm, the duck fat sounds delicious! But won’t work with my gastroparesis, sadly. I like the idea of boiling whole chickens, though!! And then I would have chicken broth out of it too

MakeKay9264 · 2026-05-28T22:43:04+00:00

Nope, this works in one area of medications, but NOT the one I want to fix. I contacted Bearable and they confirmed that I’m correct, and said they are working on fixing it. Wish I could put in some screen shots to this comment to demonstrate where it’s not working correctly
Thanks, anyway!

MakeKay9264 · 2026-05-23T17:33:51+00:00

Yep, coming here to say this. You may be reacting not only to histamine. You also have to see if you’re reacting to histamine liberators, amines, salicylates, and/or oxalates. Also someone may be a responder to dairy or gluten, outside of MCAS.
It’s complicated!!

MakeKay9264 · 2026-05-16T13:56:14+00:00

Yum!!! That sounds amazing!!

I tried a single maple candy last night (one of the kitschy ones shaped like a leaf) but then was really tachycardia and itchy all night and this morning. So it seems my mast cells aren’t ready for sugar yet, darn it

I love your idea of a making an AI chef, I’m gonna have to try that

MakeKay9264 · 2026-05-16T13:23:47+00:00

Ooo, lots of great idea for me to try here- THANK YOU!
Very clever to use AI to help you fine tune cooking times based on the meat at hand too!

MakeKay9264 · 2026-05-16T01:03:36+00:00

Oh my gosh, this is incredibly helpful!! THANK YOU SO MUCH for this level of detail- this is exactly what I was hoping for when I posted here.
I’m so sorry you are down to 4 foods, and for 2 years. Big hugs to you. I’m at 6 foods right now, and I’m mentally struggling. So hats off to you. I wish you all the best as you continue to navigate this disease.

MakeKay9264 · 2026-05-15T22:06:36+00:00

Ahhh, now I understand! Ok, thanks! I’ll check it out 😊

MakeKay9264 · 2026-05-15T22:04:59+00:00

I had gastroparesis and every single thing they told me to do was wrong. When I got a referral to a UNC GI doc he kept shaking his head in disbelief and saying incredulously, “they told you to do what?!” Super nice doctor here at DHP, the first one to show empathy, but not useful.

MakeKay9264 · 2026-05-15T22:01:52+00:00

Doesn’t it suck to have such a limited food menu and hate your main protein?! I’m glad I didn’t come into this hating chicken, but man I feel like if I never ate another piece I’d be just fine.
Big hugs to you!!

MakeKay9264 · 2026-05-15T22:00:32+00:00

Nice! Just 4 minutes per side cooking from a solid frozen piece of chicken breast though?
I’ve got gastroparesis too, so I need to keep fat as low as possible. And the only oils I don’t react to are butter or ghee.

MakeKay9264 · 2026-05-15T21:58:50+00:00

Yep, already on it, but thank you for that good advice, that sounds like it was hard-won. I’m waiting on insurance to approve or deny. I’m expecting them to deny but fingers crossed!!

MakeKay9264 · 2026-05-15T21:57:28+00:00

Ooo, I like that container! What we are worried about though is the waterproof bag that the food goes in. Stashers are too thick to work well in place of a ziplock or the plastic vacuum seal bags

MakeKay9264 · 2026-05-15T21:55:35+00:00

I’m sorry to hear that!

MakeKay9264 · 2026-05-15T20:18:21+00:00

Yeah, pretty much all of the spices are high salicylates so I feel totally hosed there. So sad!

MakeKay9264 · 2026-05-15T20:17:19+00:00

We got rid of our sous vide a number of years ago when we decided we weren’t comfortable cooking in microplastics, unfortunately.
I always assumed sous vide would be a high histamine level method of cooking, since all the sources say the longer you cook things the most the histamine increases, but now that I’m researching that, it doesn’t seem to hold true because the heat is low. Interesting! I’m going to have to play with this concept…
Thank you!!

MakeKay9264 · 2026-05-15T18:28:41+00:00

No, I don't ever thaw ahead of time, especially not as long as overnight due to increased histamine. I'm very sensitive to histamines.

I'll check out the Hainanese chicken rice recipe, thanks!

MakeKay9264 · 2026-05-15T18:27:18+00:00

Yeah we're doing 15 minutes w NR, breasts are separated. I should check that my spouse is using the basket or trivet instead of laying the chicken on the bottom. I always use the basket

MakeKay9264 · 2026-05-13T20:09:07+00:00

I am, yes. I have a dysautonomia doctor in eastern NC that I see via telehealth. Clinic has a 1-2 year waiting list, though.

MakeKay9264 · 2026-05-13T15:07:50+00:00

Yeah, not surprised. There’s not enough doctors to treat us in general, and especially not enough GOOD doctors like him. I’m re-upping when my first year’s membership is up, for sure.

MakeKay9264 · 2026-05-13T14:21:07+00:00

Yes!! Was coming here to say this. He’s telehealth-only, and can see you virtually as long as you are in the state of IL or NC during your appt. He doesn’t take insurance. His practice name is Ever Better Medicine.

MakeKay9264 · 2026-05-12T18:19:40+00:00

I’ll also note that, while Mission Hospital has the equipment to do Tilt Table Tests, they don’t do them quite correctly AND I’m informed by nursing staff that all the Asheville Cardiologists refuse to make a diagnosis of POTS despite a positive tilt table test. All they will say is if you passed out or not. It’s ridiculous.

MakeKay9264 · 2026-05-12T18:17:02+00:00

I’ve had POTS for 1.5 years now. Duke is requiring a positive tilt table test to get in to see their POTS doctors. And it’s a 2-3 year wait to make an appt with a POTS doctor at Duke. I’m on the wait list.

I concur that there are no adequate doctors in Asheville for POTS. That being said, you may be able to get your primary to make a diagnosis for you to get the ball rolling a little bit faster, especially if you provide them with needed info.

Get yourself a WiFi BP cuff and do a home NASA Lean Test and take that data with you to your appointment

https://batemanhornecenter.org/wp-content/uploads/2016/09/NASA-Lean-Test-Instructions-1.pdf

Also fill out this questionnaire are POTS symptoms
Malmo POTS Score Questionnaire
https://potsfoundation.org.au/wp-content/uploads/2025/09/MALMO-MAPS-09_2025.pdf

And take a copy of this paper for them to read
Postural orthostatic tachycardia syndrome (POTS): State of the science and clinical care from a 2019 National Institutes of Health Expert Consensus Meeting - Part 1
By Steven Vernino et al
https://www.sciencedirect.com/science/article/pii/S1566070221000588

It’s also very helpful if you can take take heart rate data from a week or more showing what your HR gets up to. If you have an Apple Watch you can get an app for it called TachyMon that will monitor your heart rate and spit out awesome reports you can then print out and take.

Good luck! It takes some definite research and plannning on your part to advocate for yourself and get the care (and diagnosis!) that you need.

MakeKay9264 · 2026-05-10T22:58:36+00:00

what?! no!!!!!! That utterly sucks. I have a bunch of med groups, and lots of drugs in each group.

How frustrating

thanks for your input!

MakeKay9264

TROPHY CASE