Good evening. Met with the pulmonologist via video call today, and it was pointless. He continues to say to send him the reports from the Ring for ox sat data, but since he’s not ordering sleep studies or otherwise reacting to the data, it’s frustrating and pointless, in my humble opinion.
Nothing like watching an oncoming train wreck and being powerless to change its course.
Really worried about losing brain function to this disease due to oxygen saturation deprivation, but can’t get a second opinion via the palliative care team as they still haven’t acted on my May 3rd request for enrollment in their program (there’s a long waiting list to get in, and I have no idea what their capacity is, or what average wait times may be). So frustrating !
Still no resumption of my Better Breathers Club sessions a year and a half after they stopped all meetings, and I don’t think the hospital is going to let the club resume meetings any time soon – especially since the county is now back to mandating / strongly recommending masks for all indoor activities given the rise of Delta variant corona virus cases in the state.
I’m not expecting to live forever, but I would like to avoid oxygen deprivation issues while we all concentrate on the coronavirus to the detriment of other, more practical, concerns. Life goes on, and if I can’t qualify for euthanasia yet, it would help my peace of mind a lot to know I wasn’t doing damage to my brain that might disqualify my ability to opt for it in the future.
So frustrating to not have answers or an action plan to preserve my quality of life !
Otherwise, same crap different day.
Staying busy with the garden and trying to clean up my messy house and yard in preparation of PG&E’s replacement of our gas and electric utilities over the next year and a half (oh, joy! Construction noise).
Started building a third raised bed dry stacked pavers tiered planting bed to split up my irises into two locations so that they will have more room to spread their roots. All the busy work in the world, though, will not keep my brain from wondering if my shorter attention span and faster temper is a sign of brain degradation from low oxygen saturation periods, and if brain damage will stop me being rational enough to pass tests to certify that I’m in my right mind to opt for euthanasia when the time comes…
To paraphrase Richard Dreyfus’s character, Ken, from the brilliant film, “Whose Life Is It, Anyway?”:
“The only thing I have left is my consciousness and I don’t want that paralysed as well.”
I went to see Black Widow with a friend last night, and in the middle of an otherwise enjoyable evening, I’m gasping in pain and twisting uncomfortably in my seat as my diabetic neuropathy flares and my feet are on fire. Despite the topical. Despite wearing sneakers two sizes too large to protect my crazily sensitive toes…
I am already worried about my other friend, having enough funds left to care for herself as her dementia progresses, without worrying that the current pandemic restrictions are actively eliminating my freedom of choice in the future as my ability to control my own body and its response to pain.
No answers here, but I don’t want to be trapped in my body enduring personal care indignities like this trapped soul…