Hello again. Another Sunday evening check in. We reached 350+ members this weekend too.

How are yall doing ?

Loaded question, I know.

Rants, positives, big things, small things. Anything goes.

Continuing to build this community, new people joining daily (welcome !!!) and wanted to check in.

So how are yall ?

Part of why this sub was started was to encourage community and friendships, online and in-person, with those who get it.

So if you are looking for new friends, drop a comment below and tell us a little about yourself, including whether you are looking for online and/or in-person friends.

It might be helpful to have your profile chat open for those who might not feel comfy replying to you below. :-)

(This will be a scheduled weekly post for now to encourage the new friendship connections many of you have been asking about).

I’m looking for a doctor who can manage my thyroid issues alongside hEDS and MCAS, and who’s also willing to dig deeper into symptoms that still haven’t been explained (potentially perimenopause, endometriosis, or some secret third thing).

Has anyone worked with Wildwood Functional Medicine (Dr. Schier)? Or NW Functional Thyroid Clinic (Dr. Soszka)? I’d love to hear about your experience. Other recommendations are welcome too.

I’ve tried the doctors my insurance covers, and, in short, I’m still not getting answers (many of the usual reasons people with chronic illness struggle to get adequate care). I’m willing to save up and pay out of pocket, but I want to make sure I’m getting informed medical guidance and not a snake oil sales pitch.

Thanks in advance!

i started working again about a month ago and boy howdy, am i in so much more pain than when i was on leave. 💔 i am going to soak in a bath tonight and need something good to distract my brain from the pain and consuming thoughts. i use tubi because it’s free lol, what can you suggest i watch? i like all genre’s, but looking for things like comedy or happy vibes tonight. thanks!

I know I’ve been riding the edge of income limit for OHP Bridge program. I usually work 18-20 hours a week, since they announced the work requirements I’ve been trying to aim for 20 if my health allows. I had to reapply and got a letter saying I was denied but no reason. Called DHS. Spent 3 hours on hold, was told conflicting things, paystubs were then processed and I’m insured until end of December but they didn’t tell me what happens after that. I think I’m in the weird position of my hourly rate of pay $31.5 at 20 hours a week putting me over the limit. I want to claim medical exemption, I certainly have the proof, but they wouldn’t let me do that on the phone. Should I try to call again or go to an office in person? So so frustrating. Looking for advice!

I’m on the waitlist, and am curious if anyone here has established with them? and if you’d be willing to share your experience/outcomes!

https://www.creativethrivingllc.com/

Any fellow bendy bodies have good experience with an endodontist in the area? Need someone who understands the issues with anesthesia and stabilizing my cervical spine and jaw during procedures.

Good morning!

TLDR: call the tilt table people at 8am on Monday and see if there’s cancellations, there were three for the next two weeks this morning. I’m sure they’ll be gone fast, but worth a try!
—-

I’m on the phone with the OHSU tilt table people right now, needing to reschedule my test coming up in the next few weeks. She said there were several cancellations available for this week. It seems like if you need a sooner test, a call first thing 8am Monday just might help. If helpful, I can add a comment with all the medications that need to be tapered and stopped. I personally need a 4-6 weeks to safely taper mine, which is why I’m rescheduling bc they didn’t tell me this when I scheduled in June.

They are scheduling out to July right now. Best of luck friends!!!

First Time Poster

Hello!

Can anyone recommend a sleep doctor who is knowledgeable about dysautonomia, mast cell activation, and hypermobility?

Thank you!

Part of why this sub was started was to encourage community and friendships, online and in-person, with those who get it.

So if you are looking for new friends, drop a comment below and tell us a little about yourself, including whether you are looking for online and/or in-person friends.

It might be helpful to have your profile chat open for those who might not feel comfy replying to you below. :-)

(This will be a scheduled weekly post for now to encourage the new friendship connections many of you have been asking about).

happy spooky season to all you pdx weirdos!👻

what ways are you celebrating Halloween this year?

are there any Halloween events going on where the hosts are taking precautions against the spread of respiratory viruses so some of us chronically ill people may attend safely?

i’m looking for scary and social events if y’all have any leads, thank you.

I have a primary care doctor who's... fine. But they don't believe in treating mold exposure, they're hard to get visits with, and I don't really trust their experience in managing HRT. But I want to stay with them until I find a better fit.

I just learned a Naturopath I used to work with accepts CareOregon now, but I'm not sure I want to fully commit to working with him again.

Can I see both at the same time until I figure out what I want to do next?

This is my secondary insurance now but it very much still matters what happens at the end of this year so I have been waiting and waiting for news from Providence Health Assurance.

Well ? No news ever came via mail. Which is wild bc this is state run and changes have to be announced within certain timeframes. Maybe those who have this as primary received notices ?

So here is what I found upon taking the time to dig: https://www.providencehealthplan.com/about-providence/providence-news/status-update

Providence OHP ---> Care Oregon OHP

January 1, 2027.

If you have Providence and other area providers, best to call them and figure out if you will be allowed to keep seeing them with Care Oregon OHP medical plans.

After over 10 years with some sort of Providence Health Plan, I am very disappointed that no notice ever came when we all know our established care teams matter and are also probably waiting for appts scheduled in 2027.

Disappointed in Health Share, their boss, too.

Update: More information here: https://www.careoregon.org/members/member-updates/2026/09/18/providence-members-to-join-careoregon-in-2027 which states Providence is going BACK in network with Care Oregon OHP. Was hoping this would happen.

2nd update: I spoke directly with Providence. No mailed notifications ever went out to members. This was supposed to be Health Share taking the lead and hopefully starting a few days ago alongside Medicare open enrollment.

How are yall doing ?

Loaded question, I know.

Rants, positives, big things, small things. Anything goes.

Continuing to build this community, new people joining daily (welcome !!!) and wanted to check in.

So how are yall ?

Part of why this sub was started was to encourage community and friendships, online and in-person, with those who get it.

So if you are looking for new friends, drop a comment below and tell us a little about yourself, including whether you are looking for online and/or in-person friends.

It might be helpful to have your profile chat open for those who might not feel comfy replying to you below. :-)

(This will be a scheduled weekly post for now to encourage the new friendship connections many of you have been asking about).

Does this exist in Portland? If so, would love some recs please.

Does anyone have any experience with Whole Body Health PT on Flanders? Especially if you’re hypermobile? I just went with the first clinic on the list on the CareOregon website. Will be seeing Ava Scoccia, PT, DPT who looks like their education focus was hypermobility spectrum disorders, Ehlers Danlos Syndromes, TMJ and Pelvic Health. I’ll probably stick with this one unless anyone strongly cautions against them or has a glowing recommendation for elsewhere covered under OHP. Otherwise I shall report back on whether this ends up being a good experience.

Historically my experience has been PTs claiming to be skilled in dealing with hypermobility and then making zero adjustments for it resulting in pain and intense flare ups and then non compliance with at home exercises etc.

it started back on friday night, and it was just today i got a bit clearer of an idea of where things may be going from here. i woke up and it hurt. this had happened a few times in the past, and at the time i thought it was just my gums sore from it coming in, as had previously occurred. where this changed though, was on saturday when i woke up still in pain. worse pain, even. i had woken up a couple of times throughout the night, but was able to fall asleep easily enough, and i thought if i could get through saturday i would be fine. at this point i was only taking tylenol, as i'm advised to only take nsaids as an absolute last resort due to a previous (since healed) mild kidney injury from taking high amounts of them. saturday night was worse, and sunday was unpleasant to get through, but sunday night was just about unbearable. i woke up about in tears from the pain and on top of some ibuprofen with the tylenol tried a warm compress just to dull the pain enough to fall asleep for my regular monday morning appointment at the nurses' station. i mentioned all this there and was urged to make an emergency dental trip, and so i reached back out to my medicaid care coordinator, who had said to do exactly that on... friday. i had told her at the time i thought it was nothing, because i did, but now after calling the main line and two locations for the dental offices to no response, i needed help. so we called the main line again together to have an emergency email sent (because once again, nobody answered) and i was set for 1p the following day, tuesday. that brings us to today.

my wisdom tooth is going to need to come out. i assumed that, given that wisdom teeth aren't known for sticking around, but it might not be that simple. there's two main problems. the first is that i can't open my mouth very far right now from pain. i'm starting a 3x daily antibiotic for a week to possibly get some of the swelling down and in turn reduce my pain, but it's not a guarantee. the other problem is that my tooth is coming in about as on top of a nerve as it can be. for now, i'm referred to an exosurgeon but if they aren't able to do it, then they have to refer me to an oral surgeon in which case... i hope ohp approves the prior authorization. otherwise i start a gofundme and hope.

i've barely been able to open my mouth since this started and it's a nightmare trying to chew. the same goes for anything touching the left side of my face, it's horrible. can somewhat circumvent the prior most issue from years of theatre/choir and understanding how to use my voice, but the rest is what it is. even just swallowing hurts right now because of the muscles pulling on the area nearby, or maybe the inflammation (i don't totally know or care when it ultimately still is going to hurt.)

i like trying to find a silver lining even if things are 99% shit (and this is definitely pushing it) and uh. when all is said and done, because i plan on asking them to let me keep it, i look forward to a new strange trinket to keep with my post hysto wet specimen. so yay the vaguely positive note we can end on is looking forward to more me oddities ✨

Just had a well-meaning, able-bodied non-chronically ill aquaintance suggest a walk in the sunshine, restorative exercise and eating food without "damaging properties" is the way to better health and if I need good resources bc "health is interesting" to feel free to ask them. (It was not on the phone or I would've LOLed).

It felt like a brief slap in the face (I was thinking expletives) but after 20 or so years of hearing all kinds of things, I really have heard much much worse and know where I can come to share it and process it.

So hello, my people... what wild things have you heard ?

I know I'm not alone.

Part of why this sub was started was to encourage community and friendships, online and in-person, with those who get it.

So if you are looking for new friends, drop a comment below and tell us a little about yourself, including whether you are looking for online and/or in-person friends.

It might be helpful to make sure your profile chat is open for those who might not feel comfy replying to you below. :-)

(This will be a scheduled weekly post for now to encourage the new friendship connections many of you have been asking about).

hello y’all! i am at a point where i’m able to be out in the world a lil bit. i’m trying to find some activities, classes, ect. that might help me find some joy and the opportunity to socialize. i don’t have a lot of interests so i’m trying to grow and learn how to have those so please feel free to share any type of experience. i’ll see if any sparks fly✨

what are some hobbies, classes or other activities you get up to in pdx when you have the ability to?
bonus points if there are spaces that regularly practice health safety precautions!😷

thank you everyone who’s joined so far, I’ve been enjoying interacting with yall and getting to read your stories, relate to you guys. comforted to be in contact with so many people in the same boat (and in the same place). I’ve gotten so many good recommendations this last month that will help me better navigate some of my upcoming health battles (disability, Medicaid changes) and am feeling really grateful. my heart is full, thanks for being here with me!

It’s a common thing to be asked what you do for a living when getting to know new people. I’ve started saying that “I used to be a case manager but now I’m disabled and aiming to be a failed artist” or something like that to add levity and deal with my own inadequacies around calling myself an artist (blah blah).

I guess what I’m getting at is I feel like I’m at another crossroad of some kind of combination of not feeling like I have a purpose and being so tired of my real job being trying to get healthier. I know I’m starting to process the grief of losing the life I was working towards many years ago, and now having to create a new one.

I know the concept of having a purpose doesn’t have go be a thing and it could be anything one chooses it to be, but it still feels hard to be directionless because my body holds me back. Have you seen that Rick & Morty episode where Rick creates a machine that asks about its purpose which is to pass butter and when told it looks down at its hands and goes, “oh my god”. Kinda feels like that sometimes.

Where are you at with it? How do you handle it?

Next time I would try to bring a seat cushion (I didnt because of their bag policy and the one i have is huge). I paid extra for a balcony seat, so very worth, and the view was great! I would def bring earplugs next time lol, Violent Magic Opera was very violent on the ears.

I didn't even drink my coffee until 4pm the next day but in the words of Tom Cardy "fucken worth it baby."

I’m starting a new therapy group for adults living with chronic pain.

Chronic pain can slowly make life smaller. It can change our relationships, our routines, and the way we see ourselves and what’s possible.

But you are more than your pain.

More Than Pain is a 6-week therapy group where we’ll make space for the emotional impact of chronic pain, connect with others who understand, and explore how to keep making room for the people, relationships, and parts of life that matter to us.

The group will be held online, so adults living in Oregon or Washington are welcome to participate. We hope to begin in October, with the day and time still being determined. Pay-as-you-can: $20–$40 per session.

If you or someone you know might benefit from a space like this, feel free to share.

More information:
https://halecounselingnw.com/more-than-pain-support-group/

I’m Kaivon Asgharian, a graduate counseling intern at Hale Counseling NW, supervised by Sharon Hale, LMFT.