Frustration continues

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…

7 thoughts on “Frustration continues

  1. Crud muffins! I had a nice comment all prepared and hit the wrong button and *POOF* it was gone. I said that I was very sorry to hear about all this. That’s terrifying! One thing I might suggest is to find a different pulmonologist. The guy you have is not doing his job and why sacrifice more of your health to a bad provider? If he’s the only show in town I guess that’s one thing, but surely there are others in your area? Hubby died in part from complications of his COPD. One thing that didn’t happen was he never lost cognition, if that’s of comfort. And he smoked a LOT of marijuana, right up to the end of his days. That stuff theoretically makes the user’s memory real sketchy all by itself, but hubby kept his marbles. I don’t think you’re going to lose your mind, unless it’s from bad care and frustration and in a purely theoretical way. As to your euthanasia efforts? Isn’t there some way to have that in place, particularly in light of your failing health? Like the DNR on hospital records sort of idea and the living will? They don’t allow euthanasia (for humans) here so I don’t know a darned thing about it. I do ‘get’ the ‘I’m trapped in a failing body” fear though. NOBODY wants that, and again a bad provider in your circumstances seems unthinkable. Best of luck with it all and keep me posted. The neuropathy? My current psych put me on Cymbalta (the generic version) and it’s made huge worlds of difference in the stinging stabbling pain. My feet are overall numb all the time so I have to be uber careful of damage I might do to my feet, but the damned pain (which would wake me up sometimes and keep me awake) is gone. Hallelujah! The combination of gabapentin and Cymbalta made most of the symptoms disappear altogether, but they don’t like having a patient on both (apparently). I hope you can lose that aspect of things anyway. I’m thinking about you!

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  2. I have neuropathy issues in my feet as well as AS and I’m in a lot of pain most days. The only way to cure it is to have surgery. I’ve been told this could make things worse, so at the moment I’m in a no win situation.

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  3. Surgery, Glyn? What kind? Something to cut the nerves so that you don’t feel the pain? I’m sorry you’re in pain, too. It sucks, and I know you have it much worse than me. Spondyiliosus (or however you spell your failing back situation) is a nightmare all on its own.

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    1. On top of the AS I have circulation problems in my lower legs (below the knee). The valves in the veins are not working as they should be. Blood is going down to my legs okay but it’s not coming back up as it should be. This causes my skin to become dry and sensitive and my legs and feet to swell (I have to wear compression stockings). I have Aquaderm ointment that I use on them everyday but I can’t reach my feet because of my AS in my back! I do see the practice nurse once a week and she makes sure there is no infection etc.
      My right foot is fused, so there is very little movement in it. I have had shoes made to make things easier (including fitted insoles) but the rheumatologist says surgery could make things worse, so I have to manage the pain as best I can.

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      1. I hear you, Glyn. I will not bore you with all my co-morbidities, but I’m glad you can still find joy and purpose in life despite your pain. As for me? Not so much. I get up every day trying to find the joy, and some days are much better than others.

        I just don’t know how people dealing with constant bodily failures do it. I’ve been dealing with this crap all my life from birth defects, and all it does is leave me angry and frustrated. 60 years of frustration gets quite old.

        Hoping today is a good one for you. Take care.

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  4. Sadly, Sparks, gabapentin and cymbalta were two of the many drugs Auntie was on to cause brain shrinkage / damage. As always, I’m pleased that you are finding both meds helpful for managing your pain, but between the studies and the lawsuits for brain damage, it’s counterintuitive to me to take a medication that solves one problem while causing another, more serious one.

    I told you, I think, that the benign tumors causing my beer belly shape are the side effects of the breathing medication, right? I’m down 25-30 pounds from the side effects of the Jardiance (diabetes medication), yet the only thing getting smaller is my butt. My belly keeps going and going and going, LOL.

    As for Newman, he *is* the only game in town because he controls my ability to survive my disability audits (already had 2 this year, oh joy). While he has given me a referral to a palliative care team (the only way I can actually qualify for euthanasia without being on hospice in CA), my hands are tied until they decide to give me an admissions review and decide if I qualify for their services.

    Unless I want to risk suicide (which will then deny me access to euthanasia as a mental health head case), I have to play the game and wait it out. Sucky, but euthanasia is truly difficult to obtain without being given a finite amount of life left to live.

    Since I’m not suicidal, but merely want to end my pain while still in charge of my mental faculties, it is going to take as long as it takes to fight for the principal of ending my suffering on my own terms while remaining true to my agenda. I don’t have the answers. I’m still (mostly) enjoying life and the pain is tolerable, which helps when the frustration and pain escalate.

    Gabapentin study: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4117164/

    Cymbalta lawsuits summary: https://www.shouselaw.com/torts/lyrica-cymbalta/

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