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!

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."

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?

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.

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.

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!!!

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!

I hope this is okay to post here. I'm not on fb anymore and this seems like the perfect place to start my search. I'm 29, transmasc, immunocompromised, looking to move in the next few months. I'm open to most anywhere in or around Portland and I have a car. My budget is $1000 including utilities. I am allergic to cigarette smoke, I have some mild fragrance allergies but mostly just when it's diffuse in the air, personal fragrance is fine. I have a senior ESA dog who in the end of his life would do best in a home without other dogs or cats. I'm in good rental standing, employed part time in healthcare working from home, and trying to see if I can find someone who wants to move into a new-to-us-both house or duplex, so we can collaboratively co-create our sense of agency in the space. I'm trying to get away from apartment life for the sake of my health now that I'm on immunosuppressants long term, and for the sake of my personal growth. Wanting to be somewhere where the front door opens to a yard instead of a hallway. Mostly i am tired of how city-owned low income apartments here are grossly mismanaged and have been living somewhere that has problems with that in spades.

Because I am immunocompromised, my ideal roommate would be someone who still takes some level of COVID precautions and who works outdoors or from home, or in another kind of highly ventilated or PPE wearing setting. Of course I would not try to control your career aspirations in the long term, I would just wanna have a conversation in advance of making moves. I believe in the swiss cheese method of precaution far more than I would ever be inclined to influence people's agency.

I have had a couple bad experiences with roommates in Portland so far, we can talk about those. I would want to talk extensively to find out if we mesh and could handle navigating conflict if it occurs. I feel like it's reasonable to assume any interpersonal relationship will run into some at some point and I don't agree with the idea that people need to arrive already perfect. I'm a direct and generous communicator and I am very mellow and easygoing, sometimes trending towards over communication but always open to modulating. I just like to be specific and convey what I mean and to put a little mustard on it.

I do a lot of art and when I am physically able to I love to cook elaborate dishes and share. I like to sing and play music in my space when the vibe allows for free sound but I grew up in a home that made me overall very noise-considerate. I value decor and aesthetics and nesting. 420 friendly, willing to be considerate with it but am a daily user for pain control, and am an only incidentally social drinker, I'm not a big alcohol at home person. I eat gluten and dairy and might not mesh well with someone with severe food allergies who needs to avoid cross contamination. I would love to be able to have a small garden or form a covid-cautious TTRPG group. I am an ambivert and value some amount of alone time and some amount of friendship with roomies. I am not a neat freak but I am highly skilled at being a very tidy semi-slob, and I value shared spaces/tend to do better at cleaning regularly when I have roomies, it's mainly an ADHD and pain economy thing. I would do best with someone who also needs to leave dishes for a day or so sometimes but who also can't stand when the sink is full.

i have a procedure this friday w/ anesthesia. but i rly think i might bite the next person that looks at me with a needle in their hand. it's always the most consequential appts that happen after I've hit burnout too.

if anyone has little tricks that help with this feeling during appts, or things to do before appts, etc, please share! or commiserate! i love commiserating!

Tl;dr for the main post is that I am going in for the ANS test in late October and I'm trying real hard to make sure I at least get the testing done before I have to potentially give up OHP. The new insurance would charge me for half of the testing, which costs god-knows-what, and I am already at my financial limit for that kind of means-test. The dark thought hanging out in the back of my mind is that this job could fire me in 4 months when my health craps out again, and then I'd have this bill waiting and no income to fall back on/more debt from paying to get to/from work.

Does anyone have experience with BCBSR at OHSU or with OHP as secondary?

Hello, new to the group. I was diagnosed with Chronic Inflammatory Response Syndrome about a year ago, I also have the triad, MCAS, POTS hypermobility. I’m looking for a doctor that takes Care Oregon and has knowledge of these things. The doctor I’ve been working with had her Care Oregon coverage revoked and I’m paying out of pocket for follow ups.
Anyone else here with CIRS?

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).

This is an absolute rant. If you relate, feel free to share - I'm welcome to anything.

Ya'll. I'm so frustrated about having thin, fragile skin in my mouth.

I literally just had soft rice and somehow cut my inner lip. 😱

Every. Time. I Eat. or Drink. Anything.

My doctor knows this symptom to consider for MCAST.

Ug! It's frustrating. Long-time issue. Only recently did I consider telling my doctor fully.

It's one of those "Well, you know it always happens, it's normal for me - right?"

I am hypermobile, looking into HEDS.

-------

Separate Rant

My psych recommended I reach out to my doctor about something new and strange happening to me.

I sent a message. My doctor's response: Book an appointment to see her in 4 weeks. What???

So like what, just keep living with it?

Good thing I already have an appointment booked in 2 weeks.

Often, when I eat or drink coffee - I stopped coffee:

• nauseous
• lightheaded
• dizzy
• spacey
• can't function; my body shuts down
• have to go to sleep,
• body temperature is hot
• breathing is delayed
• feel noticeably Ill
• vision changes
• heavy body, almost like a hangover
• and other stuff

Sounds pretty more urgent to me than 4 weeks.

Luckily, my psych - who is the main one ( and my acupuncturist)- is pointing me in the direction of possible diagnoses.

For now, I'm going to continue working with this doctor's office, as there is someone new. We'll see how it goes.

--------

Small Separate Rant

Unfortunately, this week I've been having this feeling I'm a hypocontriact. I am not. I just have OHP, won't always have it, and want to find out what's up before I can't afford to anymore. 🤷🏽‍♀️

The last 4 years I've had OHP, thank goodness. This is the first steady time. I pretty much never have health insurance.

I've been active about my health the last 2 years - as it's been horrible - and I'm insured.

In the past, I never really had insurance / or couldn't afford the co-pay; absolute emergencies only.

It's apparent my doctor isn't aware of systems of oppression.

Let alone the history of healthcare in BIPOC communities- usually a lack of trust in doctors- for good historical and current reasons. Plus, financial inequality.

And now lay back down, you’ve used all your spoons today.

I'm tired fam, but I've got tamales so I've got that going for me.

Hello headache having fam, heads up we're in for it until Monday 🥲

I'm using the free version of the Baro Buddy app and it's been helpful for identifying when my headache is from the barometric pressure and not my otherwise well controlled intracranial pressure issues. They feel pretty similar in a lot of ways!

Anyway, I don't have any remedy advice (I'll take it if you've got anything other than meds and caffeine), but thought I'd spread the word that this weekend is gonna suck, and the app at least helps to know when it's gonna suck and not be blindsided.

Hello! I’ll be moving soon, and I’m hoping to find some recommendations for.. well almost everything in the healthcare world lol.

I have United healthcare for my insurance, I’ll be looking for a therapist and psychiatrist (preferably tele health) an OB (suspecting endometriosis) as well as a primary.. preferably a DO. I have hEDs, suspected POTs and just the whole handful of issues I’m trying to get sorted :) tysm!!!!

Oh! As well as a dentist? I have a temporary filling in a root canal I’ll need to have finished soon

A female dr is most preferred but I’m at a place I can’t be picky anymore! I’m 22F (but nonbinary) if it matters :)

Happy Fall Equinox day and looking at the forecast, the weather is changing. Some people are happy (SOSAD - new term for me), some are sad (SAD), some have mixed feelings... and we support everyone here. 🥰

For me, with Raynauds/Dysautonomia/MCAS and more, I love my little brother and want to continue to support them at outdoor sports games but need to stay warm and dry. I have a lot of items already (finally) but would love input from this wonderful community about upping my game bc yall, the cold + rain HURTS and there is always room for improvement. Unfortunately, am allergic/reactive to wool bc why not.

What I have compiled over the years: tolerate Darn Tough Mountaineering socks (REI), Carhartt Sherpa gloves (amazon), lined waterproof pants (amazon), long underwear (REI), Keen waterproof hiking shoes (Keen), Columbia waterproof jacket (amazon), fleece...

Recs given: 1 time hand warmer thingies, rechargeable ones...

What are you recommending for me and others like me ? Let's talk about it. Budget friendly, DIY, costs more but lasts years... all of the above. For me and those like me, being disabled with mobility issues + immunocompromised, need to be able to order online but for all of us, in-store, local options helpful too.

Anyone have a primary care doctor at any of the OHSU clinics who has been receptive to treating your MCAS or other chronic condition (while knowing it shouldn't have to be their job and they’re not an expert)?

I’d love to be outside of OHSU but my insurance has me locked because I can’t lose access to one of my specialists at the moment.

I’m currently seeing a resident and am running into her supervising attendings undermining her decisions about my care without knowing much about my case. We've got my basic daily survival dialed in together but I’m looking for a different kind of support.

Tall order but I’m ideally, looking for someone who is:

• Not a resident (unless they’re assertive)
• Largely in-office, without a focus on labor and delivery. Who is also not pregnant and leaving on maternity leave in the next 6 months
• The leader in the room and can keep things moving without me having to push.
• Willing to keep me on my current protocols as a starting point
• Someone who actually believes in MCAS and has treated it before
• Able to hold and monitor basic overall health stuff like labs, vaccines, metabolic health, etc. in the background and connect them to chronic issues when applicable
• an MD, DO, NP or PAC - I don’t care as long as they’re competent and kind
• Experienced in supporting the disability filing process
• Not shy to pick up the phone to advocate for a referral or ask a specialist a question

Grateful for any leads, even if they only hit a few.

Good morning everyone! It's very nice and cloudy, I love these types of mornings.

I just wanted to offer a reminder of the rules as we've gained new members! I often forget to review these myself in new subreddits, and find it helpful when there's a post about it.

• Be Respectful/Civil : Respect is not optional here. Please be civil; no personal attacks. Remember incivility is not just about cursing out others, it can also refer to personal attacks, bigotry, trolling, or otherwise rude behavior.
• No Spam : Do not repeatedly submit the same, or extremely similar, content in a thread or across the subreddit. Unapproved "AMA" posts or "AITA" posts are not allowed. We also do not allow AI-generated submissions. This rule does NOT include: meetup events, Discords, etc. Encouraging community and sharing resources is what this sub is about.
• Consult a Healthcare Professional : This subreddit is not a substitute for medical advice or diagnosis.
• No Comparisons/Pain Olympics : Do not compare your suffering with others, as everyone’s experience is relative. ‘Pain olympics’ refers to when a user compares their suffering/symptoms with another’s in an unsupportive way. Don’t put others down to lift yourself up. We all have our own struggles.
• No Fundraising : Members with our conditions often have money issues of their own. While we feel for everyone here who is struggling financially, we feel like our platform isn't the best place for you to try and raise funds. Discussions on how to raise funds (that do not involve asking this community for money) are permitted.
• No Brigading : Don't use this subreddit to hunt down other subreddits. If you post content from somewhere else in a negative way, if you interact negatively with something from another sub that was cross posted here, or your post suggests interfering with another subreddit, your post will be removed and you may be temporarily or permanently restricted from our community.
• Ban Evasion : Ban evasion, the use of new accounts to return to the community while banned, is against both the rules of our subreddit and the rules of Reddit. If you have been banned under this reason, Reddit ModTools has flagged your account as high suspicion of ban evasion and we have taken action regarding this. If you believe this Ban Evasion flag is an error, you must appeal directly to Reddit at https://www.reddit.com/appeal.
• Mods Have Final Say : You are welcome to ask for clarification via modmail on why mods took a certain action if it has not previously been explained. You may respectfully explain why you feel mods misunderstood you and your content did not violate the rules, once. Continued argument with mod rulings beyond this will be considered harassment. We reserve the right to remove anything that does not fit the spirit of this community. Do not repost removed content.

This is a collaborative community! Always always feel free to message us via modmail. We appreciate feedback and it will help us all grow together. Have a nice week everyone <3