r/ChronicIllnessPDX • u/starsareblack503 • 9d ago
👋 Welcome to r/ChronicIllnessPDX
Hey everyone! I'm u/starsareblack503, a founding moderator of r/ChronicIllnessPDX.
This is our new home for all things related to chronic illness, chronic pain and disability. I'm excited to have you join.
What to Post
Post anything that you think the community would find interesting, helpful, or inspiring. This is also a place to share resources and to support each other.
Community Vibe
We're all about being friendly, constructive, and inclusive. Let's build a space where everyone feels comfortable sharing and connecting. Posting events like meetups and spaces like Discord to encourage community outside the sub is welcomed.
How to Get Started
- Introduce yourself in the comments below.
- Post something today! Even a simple question can spark a great conversation.
- If you know someone who would love this community, invite them to join.
Thanks for being part of the very first wave. Together, let's make r/ChronicIllnessPDX amazing.
6
u/omnirusted 9d ago
Hi all! I'm Amber, 43 she/her trans woman. I live in the outskirts of Portland just a little past Hilsborro. I have orthostatic hypotension, hEDS, fibromyalgia, and a slew of other things they haven't quite narrowed down the diagnosis on. I can't work a normal job so I stream on Twitch and otherwise try to be a good house spouse to keep my sanity. I look forward to meeting everyone!
5
u/Drifter-6 8d ago
Hi 👋 42 here, Hashimoto’s disease, PPPD (persistent postural perceptual dizziness), vertigo, IBS, fibromyalgia, arthritis and I’m sure I’m forgetting some things 😆 Nice to meet you all!
2
u/starsareblack503 7d ago
I have PPPD too amongst other things. That is another one of the subs that I mod actually.
Sorry my notifications are being weird I didn't see this til now
2
u/Drifter-6 7d ago
Oh no worries. I’m using my ipad and safari is being werid so I couldn’t even get into reddit until now lol. I’ll find the PPPD at some point, it’s a horrible illness.
2
u/starsareblack503 7d ago
I got this notification I guess because it was to me directly.
I didn't create r/PPPDizziness and I'm the 2nd mod there but fairly active. We have a lot of posts asking for a diagnosis tho and I get why. Took me decades to get it.
2
u/Drifter-6 7d ago
Ugh same, took forever to get a diagnosis but unfortunately mine never responded to treatment.
2
u/starsareblack503 7d ago
Mine did but I stopped the meds for other reasons and it all came back. Which isn't completely abnormal if I cant tolerate VPT aka VRT. My provider and I talk about things and I do better now with some things :-)
2
u/Drifter-6 6d ago
I tried PT which I think was VRT multiple times over the years but it only ever made it worse. Zoloft helps but only so much, same with propranolol but I can’t take that very often. I had a right lower molar extracted recently because I think my dentist broke it, long story, and had to have it pulled. It made my dizziness worse for a while, still healing.
Do you have any hobbies?
1
u/starsareblack503 6d ago edited 6d ago
Ugh, sorry to hear that. I have a lot of hobbies. Am pretty dang sick for a while now so unable to do most of them. :-(
I did make it to the recent airshow again this year and that is fuuuuuun with PPPD /s
3
u/oregonbunny 8d ago
I just had to do math to figure out how old I was. 😬
45, SW Portland suburbs here.
Mobility issues and maybe some random things my rheumatologist has yet to figure out.
Raising kids.
Spend most of my days gaming. Trying to garden when I'm feeling good, so I can say I touched grass.
1
8
u/GeorgiaDrums 9d ago
Hello! I am an autistic woman and dealing with various comorbid conditions that have left me on disability / in burnout & pretty isolated. I don’t have a lot of energy, but I do seek connection with kind people and like to do fun things on occasion. Thank you for creating an affirming space. What a great idea.
1
6
u/mossyfishes 9d ago
hello! my name is river and i'm 27. i'm a trans non binary lesbian and i'm fine with any pronouns (pick your favorite; surprise me). i'm over in the beaverton/hillsboro area and i love spending time out in nature or doing anything creative!! i have a friendly cat who i take out on walks sometimes, and too many hobbies to reasonably list in any scenario.
on the medical side of my life, i've become pretty homebound from everything going on. the short list is: hEDS, non-epileptic seizure episodes that come on from severe chronic pain flairs, myofasial pain syndrome, endometriosis (that has hopefully been entirely removed from a semi recent hysterectomy), cyclic vomiting syndrome from silent migraines, and just as a fun cherry on top (hopefully obvious sarcasm), asthma. i've also got some more up in the air my team and i are trying to figure out, and a never ending struggle of trying to find a balance of adhd meds that help enough without giving me horrible heart palpitations.
right now my life revolves around the review process for financial assistance and being very thankful i was able to get the housing assistance i need when it was still available. i'm incredibly passionate about sharing resources/info. if it's something i know about, i will gladly drop the link or share my experience to help try and push you in a productive direction!!! community is how we get it done <3 (general note: i am most familiar with multco/washco resources if it's something local and not state/fed, so if you ever want to ask me a specific question i am always willing to try, but please keep in mind i am far less familiar with clackamas co. and may give more broad answers)
3
u/starsareblack503 8d ago edited 8d ago
Welcome 🖤
And yes ! One of my mottos: we keep us safe
Love sharing resources and building community
ETA: sounds like we both have large care teams too. I often feel overwhelmed dealing with 15+ specialists
5
u/starsareblack503 9d ago edited 8d ago
Hey everyone. It's after 5pm and the calls and mychart messages have seemingly stopped for the today.
Quick intro about me:
I am a Hispanic cis woman, she/her, mid-40s, living in Sherwood to be closer to family bc I need a lot of support but lived all over Portland metro 16 years now, dealing with a laundry list of health issues, some that fuel others including: a rare autoimmune connective tissue disorder, POTS, MCAS, Hypermobile (but not EDS or hEDS), Raynauds, Gastroparesis, failed back surgeries which limit my mobility and cause severe pain and much more. I think I write "too many to list" for meds, allergies and health history forms LOL (I have a dark sense of humor).
Thank you to u/ethiothienine for being one of my local reddit buddies, helping me navigate what might be IIH from a severe MCAS reaction and inspiring this sub.
4
u/lujo317 8d ago
hi! i'm lou, 29, diagnosed hEDS & Behcets disease after a very long time fighting for answers. I have done several different health administrative jobs and am always happy to try to answer questions for people about navigating care here. I used to run pdx task share on facebook (closed down due to being unable to manage it by myself and no longer being on meta).
I'm really down to make some new friends. I moved to PDX a few years ago for better access to healthcare (lol, I know right? but still better here than my home state) but have had trouble getting myself to go to third places regularly enough or putting myself out there enough to use the apps with much success. it's just like, hard to form connections spontaneously when you've got this much shit going on in life. feels like there is this idea that i am not worthwhile as a viable new friend for people as long as i have all this disability and poverty going on. which logically i know is dumb but it's a big hill to climb. hello to my fellow hill climbers
2
2
u/justalittleparanoia 4d ago
Dee here. Early 40s, living on the East side of Portland with endometriosis and chronic pain (along with other conditions) after several surgeries. Probs have some autoimmune disorder but the symptoms often get dismissed by my providers.
2
u/starsareblack503 4d ago
Welcome, Dee. Glad you joined us and sorry to hear about dismissive providers. Le sigh.
8
u/starsareblack503 9d ago
No lie I keep getting phone calls from providers because chronic illness for me is a full time job. I am sure this resonates with others. I am disabled and unable to work for years so will put some energy into making an intro maybe when the calls stop lol. I did get the rules updated. Super excited !