IPF Oregon

I continue to work on being more grateful for the good and not complain about what is happening, but...sometimes repeating the same mistakes makes me wonder wtf?

Well, it seams the left hand doesn't know what the right hand is doing or has done.

The caregivers themselves are wonderful people who work very hard to help patients, but there continues to be a REAL lack of communication and too much reliance on tech.

I want to make clear that the caregivers themselves do amazing work, and do their best to help people while working under very difficult conditions.

I work on on a team that supports the caregiver and their use of the tech, but now, and recently, I am a patient, so I am seeing it on both sides. I can understand why people have such negative things to say.

task, task.

Trying to get back into some type of rhythm after my last event. Healthier breakfast choices to reduce inflammation and get good proteins.

2 eggs over the healthiest homemade bread, with some blackberries and blueberries. Will wash down with some pineapple juice.

Thank you to for the BEST sourdough on the planet.

And as always...

Pushing myself a bit further each day. Just little things like standing in the kitchen chopping veggies for healthier meals, putting clothes in the laundry, getting up to sit at my PC to address paperwork requests, washing a dish,  etc etc......all the small things taken for granted. Pushing a little.

Remembering to slow the F down and rest too. Restructuring my mind for economy of movement and tasks. It can be frustrating on a minute to minute basis, but I am grateful that I have those moments. That I have this day.....another day. And I have the best family and friends who back me up - to say I am blessed would be a MAJOR understatement.

Oh, and yes. When I arrived home after being discharged I shaved my head and the beard. 😱 I need some sunshine badly. Oh so badly.

Back in the ED at St. Vincent. The excitement continues 😅.

This time the issue was derived from the cannula and o2 flowing through my nose. Dries out the cartilage, and taking any type of blood thinner, creates a dbl-whammy for bleeding........badly.

Monitoring my nose 👃 and should be back home tonight........ 🙏🙏🙏

Finally home

Here we go again...

7:55pm they show up to transport me home. WT ABSOLUTE F?

-No discharge orders.
-No final consultation with discharge planning and social work.
-The insurance company decided to play doctor and I had to take 2 more walking tests to prove I needed the upgraded o2.
-No updated o2 at home because the DME company said they couldn't deliver today.
-No discharge meds to continue taper down at home.
-Was supposed to go home today but all of the above happened, and even then the transport was "we'll schedule between 12:00 and 1:00, but maybe 11:00 and 1:00, but they do run behind a little. Is after 5:30 gonna be okay?"

So almost 8:00 a transport shows up to take me home? Really???

"know me, care for me, ease my way" Are you sure about that?

🤬

"What we think about, we bring about"

I am working OT on remaining calm.

🤬

I am REALLY pi**ed, right now. I have a great deal to say about my ongoing experience with our "wonderful" healthcare system, so my words and thoughts are measured at the moment.

The categivers are amazing peiple but i have horrible things to say about our medical insurance industry, and SPECIFICALLY those who run it.

I will be writing all about this experience when I am out.

🤬🤬

Anxiety about going home and am restless.

It's official.....

Orders are being updated and coordinated, and my discharge has me home tomorrow. Bam!