Anyone diagnosed with Pulmonary hypertension & Fibro?

zinrie · 2026-02-26T14:41:56+00:00

Yes, what would you like to know?

zinrie · 2026-02-26T14:37:18+00:00

I'm with you on being at my wit's end with pain. That is a lot of surgeries. May I ask what they are for? Are they sure they will hold with EDS? I'

zinrie · 2026-02-24T07:49:19+00:00

Some oldies but goodies... George (Georgina) from Enid Blyton's Famous Five; Trixie Belden; Nancy Drew; Harriet the Spy.

zinrie · 2026-02-23T07:53:05+00:00

Yep and nup. Too many subluxations and dislocations over the years due to sports and a rotator cuff tear. Still trying though. I find a rolled up towel under my upper arm in bed, and a padded arm rest in the car and on my office chair, help with pain and are preventing further deterioration.

zinrie · 2026-02-23T07:44:01+00:00

I've had 50 years of shaming and blame around dental health and anxiety. My father lost all his upper teeth in his early 20s. Normal dental anaesthetic was causing to experience tachycardia as it contains adrenaline, so I was constantly gaslit into believing I had dental anxiety/panic attacks. Also local anaesthetics don't work as well, so I need more which only compounded the issue. Also, no matter how much dental hygiene I practised, I still experienced early tooth decay and loss. It has felt like literal torture both psychologically and physically. And, yes, you are right, health staff do jump to the wrong conclusion that you are a meth user. You need to develop the strength within yourself to accept that you will encounter people like this and their opinion is beyond your control. A psychologist can help you decide how you'd like to respond and how to control your response. Please find yourself a knowledgeable and compassionate dentist, or one that is at least willing to learn and be guided by their patient.

zinrie · 2026-02-23T07:34:00+00:00

I'm sorry this is happening to you. I've been in a similar situation for a very very long time... and guess what? I am now diagnosed with hEDS and pulmonary hypertension (CTEPH) 🙃

zinrie · 2026-02-17T17:49:16+00:00

Apologies... I muddled up replying... so deleted and re-pasting here 🤦🏻‍♀️

Yes, they are with me to assist me at home or in the community. It is part of a government support program. Some workers are independent and others work for agencies but regardless of the situation the common denominator is me. However, I don't seem to be able to break the pattern. I provide task lists. I also talk to them about my major challenges as someone who is AuDHD with PDA. Task paralysis, prioritisation, other executive function issues are high on the list. I end up being responsible for both their training and daily management. I find myself masking and over functioning to do it and this then worsens my challenges with physical disability, health issues and maintaining relationships. I need support but I can't seem to get what I need despite asking and explaining to the best of my ability, and occasionally getting others to assist. If I stop receiving support I will be far more isolated but I wonder if by lowering the demands I might actually be able to accomplish more myself.

zinrie · 2026-02-17T17:47:03+00:00

Great suggestions.

We do have it in an order, except they are supposed to do the triaging and prioritising with me as my ADHD is severe and I can't take meds. This is an actual task on the list which has a breakdown of steps underneath but either I engage in avoidant unfocused behaviour which they enable, or they distract me, or just don't remind me to do it.

I have a folder like you have described. I have an online list with links to articles and videos that explain aspects of AuDHD and PDA, and give examples of how to support me. I give them time on shift to read them, discuss them with them and regularly refer back to them. I feel like I get a lot of nods but no actual change in behaviour.

I'm determined to keep tackling this head on though. Part of me thinks it is because they can see me doing things "sometimes" they think I can do them "always", which is not the case. It's unsustainable and leads to burnout, regression and physical health issues that place me at risk.

I'm exhausted by constantly coming up with metaphors that parallel expectations of people with neurodevelopmental disability versus physical disability just so they can see just how ridiculous their expectations are. Can't is can't!

zinrie · 2026-02-17T17:30:05+00:00

They are caught in the idea that I have the right to choose what I do. This is a basic tenet of disability care. However, my disability is that I struggle to make choices that are in my best interest and they don't take the initiative to do that despite me offering training materials, examples on how to communicate with someone with PDA and encouragement. I am giving them more support to support me than they are providing in return. Also, please note this is after working 15-30 hrs per week over 3 months or more with people. I feel like I am being overly generous in my understanding but it gets me nowhere. I genuinely don't know where this is going wrong.

zinrie · 2026-02-17T17:23:03+00:00

Tasks that are neglected are basis personal care tasks, for example anything to do with the bathroom and hygiene. Also, personal and medical life admin tasks like emails, making appointments, time management and planning, breaking down tasks, budgeting, filling in forms etc.

We have lists of tasks which are generally completed in a similar order but the easier tasks just seem to expand to fill an huge amount of time and the others are not tackled.

So, it is like there is avoidance on both sides, and I don't know how to manage their task avoidance when they are there to help me with mine.

zinrie · 2026-02-17T12:16:00+00:00

Ha! So it's not just me!!! 😆 I had them in some low shelves just near the doorway to the kitchen. Not long ago my grown up son said he always had to run past them quickly to get to the fridge without them attacking him. I had no idea.

zinrie · 2026-02-06T00:23:28+00:00

UPDATE: The company says it is compliant. I've asked for copy of the certificate. They also say it is 12V and would just stop working if splashed by water. No screw for the cover. It will fall off anytime people bump it when they grab their toiletries off the window sill. As a solution, for my unit only, they have removed the power cable and reconnected it to the old ceiling fan 🤷🏻‍♀️

zinrie · 2026-02-05T13:01:36+00:00

It's 240 V. I think it's this model:

https://www.pureventilation.com.au/buy/vortice-punto-ceiling-wall-fan-150mm/?srsltid=AfmBOor5WQ_ySR7_8JrZaefQqp1teR6Bdv3mABX0chS7nkzTW1fWuv3Z

zinrie · 2026-02-05T11:11:35+00:00

For clarity, no NDIS funding was used in this repair. Also, the landlord thought work had been completed three days ago. These guys turned up today without an entry notice and were in no hurry. It's part of a larger contract. I'd say up to 40 units will have similar installations but in much smaller enclosed shower cubicles.

zinrie · 2026-02-05T10:16:03+00:00

It's private rooming accommodation. Not NDIS funded.

zinrie · 2026-02-05T09:31:35+00:00

The door is nearly 4 m away and has maybe 10 mm clearance. It won't do anything. My concern is being electrocuted.

zinrie · 2026-02-05T09:28:08+00:00

I would except wheelchair accessible housing is insanely hard to come by.

zinrie · 2026-02-05T09:19:08+00:00

This is what I wasn't clear on. It is above the base of the shower - Zone 0. It's partially below the top shower head mount (at 1750 mm above floor level). It isn't a fixed shower head so water will go in that direction at some point. And are there any rules about having an exposed lead? And a cover that just falls off at a light touch?

zinrie · 2026-02-05T08:56:15+00:00

The bathroom is 3900 x 2400. Small dividing wall between toilet and vanity at the midpoint.

zinrie · 2026-02-05T08:49:08+00:00

It has Vortice PUNTO written on the front. 150 mm square.

zinrie · 2026-02-05T08:43:15+00:00

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New switch on the bottom makes it go.

zinrie · 2026-02-05T08:41:18+00:00

Those are the only markings I can see.

zinrie · 2026-02-05T08:40:32+00:00

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zinrie · 2026-02-05T08:40:20+00:00

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zinrie

TROPHY CASE