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!
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I’m in 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.

I’m at the end of my second play through of tears of the kingdom and need recommendations 🧍‍♀️ esp games that are brain fog friendly. i didn’t really grow up playing games and am new to them in the last few years. I love acnh, totk/botw, and then a handful of indie games!

Have you been denied accessible seating at a McMenamins venue?

I’m looking to hear from people who have been denied accessible seating or encountered similar barriers at the Crystal Ballroom or any other McMenamins venue.

Tonight, I attended Michelle Branch at the Crystal Ballroom with a VIP ticket. I use a cane and needed seating because of my disability. I saw no accessible seating option when purchasing my ticket, but staff told me I needed to have purchased a separate seating ticket to access the ADA section.

Other patrons seeking seating included a wheelchair user, someone with muscular dystrophy, and someone using a knee scooter. They also reported not seeing an accessible seating option during their purchases.

From approximately 5:30–9 p.m., multiple security staff guarded the accessible section and turned people away. Twenty minutes into the headliner, at least 11 of the 14 seats appeared empty. I can’t confirm whether those seats were reserved, but staff did not resolve our requests for a safe alternative.

It took more than three hours and three managers to get help. One manager refused to help or give his name (Thomas, according to a bartender). Another said she would arrange seating or let us watch a projection downstairs, but neither happened (Emily). A third manager eventually got four of the five people seeking seating seated, about 20 minutes into Michelle Branch’s set. I appreciate his help, but it should not have taken that much advocacy (Darren).

I’m planning to escalate this formally and want to understand whether others have experienced the same thing.

If you’re comfortable sharing:

- Which McMenamins venue and approximately when?

- Was accessible seating available through your ticket purchase?

- What reason did staff give for denying access?

- Did they offer an alternative or eventually resolve it?

Please share only what you’re comfortable making public—there’s no need to disclose your diagnosis. You can also DM me.

I’m looking for firsthand experiences, whether the venue handled your request well or poorly. Disabled patrons deserve to attend shows safely and with dignity.

hey all -

just wanted to share that you can call 800-699-9075 and self report if you cannot work/meet the new work requirements coming up. i just called and answered a few questions which did not need paperwork or proof, at least until the first cycle of renewals/2028 when this could change.

i know so many of us depend on medicaid for survival so wanted to pass this along.

if anyone has more info that an help us stay safe and covered please drop below!!!

4 (!!!) visits in 24hrs, 2 were emergency (urgent care last night then same day emergency appt today). Number 5 appt tomorrow.

Almost zero sleep. Missing my little brother's game today. Mentally and physically beat down.

No MRIs or CT scans available from any place for 2+ weeks even with stat orders. Might have to get orders sent to private places that dont share records easily which sucks.

Sad state of affairs continues for PDX healthcare.

I practice daily gratitude for mental health and I do have things to be thankful for today, even if this all is trying to break me.

How are yall. Does anyone else practice daily gratitude.

ETA:

Prov Sherwood immediate care still almost useless. I can see why they got sued recently.

The guy taking notes at appt #4 was hacking up a lung and man, being immunocompromised I almost lost my shit but asked them to mask. Not nicely my bad

2nd edit:

I'm exhausted and forgot to say THANK YOU to everyone holding it down here when I've been offline and helping support our new, growing group and thanks for updating the resources. Yall are on my gratitude list today.

Disabled and not sure what to do. I'm currently employed and on an 8 week leave for my health. This was kind of my last resort before applying for long term disability or ssdi. The reality is that I miss so much work for doctors appointments, sick days, and flares, then when I actually make it in to work I still have migraines, nausea and vomiting, and an unhealthy amount of body and stomach pain.

For context, I'm diagnosed with heds, endo, dysautonomia, chronic migraines, fibromyalgia, OCD, and probably something else I'm forgetting. The brain fog, pain, and ridiculous symptoms make it so I don't get anything done even when I make it into work. I've tried the workplace accommodations route for reduced hours and remote work, but they were deemed unreasonable for my position and denied.

At this point my health is so terrible I feel like ssdi or long term disability (LTD) would be the only reasonable option for my body, but my family has raised some valid concerns. With my benefits, going on LTD means I receive 60% of my current pay (not great pay to begin with), I lose all my health benefits, and I lose my job (on my current medical leave, my job is secure through the 8 week period). Also, my family knows it's easier to get a new job while currently employed, I totally agree, but the problem is being too sick to work and the symptoms being to unpredictable for a normal job.

I'm not in a financial position to lose so much income and also have to find and pay for health insurance out of pocket. I'm also not in a position with my health that I can just go back to work and magically feel better, or good enough to do my job.

I'm feeling pretty lost and I don't know what to do. I don't know if I should try finding a part time fully remote job that somehow gives me benefits and flexibility for appointments (seems impossible). I just want to feel better, but it also doesn't sound like these chronic conditions really have a cure or end of any kind.

My goal for these 8 weeks is to try and get my many doctors on the same page, get off some of my medications (I'm on so many and can't tell if things are getting better or worse), try to get my symptoms to a manageable place and hopefully identify some triggers.

I guess I'm looking for advice? Have you gone through this process (LTD or ssdi)? If so, are you terribly broke and still terribly ill? Are you hiring disabled people? Have you been hired as someone who is disabled?

Thank you in advance!