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  1. nona

    sh** is getting real

    I have spent most of the last week saying goodbye in person and in writing. It is surreal to say goodbye and mean it. When I entered hospice at the end of last year, I knew I had some time left to see friends and share experiences. This time, it's for real. This is not a drill. My close college...
  2. nona

    Starting BiPaP

    I started the bipap at night the summer after my diagnosis, and six years later I'm still only using it at night. I worked for two years after diagnosis ; the bipap helped me get restful sleep.
  3. nona

    PALS ROLL CALL NEW THREAD (PALS ONLY) [Wednesday or whenever]

    "my CALS is good about feeding me when needed" made me chuckle.
  4. nona

    Hoyer pep talk?

    Bill, I can't speak to the sizing, but check ebay.
  5. nona

    PALS ROLL CALL NEW THREAD (PALS ONLY) [Wednesday or whenever]

    Ah, Kevin, you and your damn sixth sense. I'm not ok. I mean, I'm in a good place emotionally, but physically I'm drained. I have gone back on hospice, this time with Bayada and already I know I'm in better hands. We have a plan for the next few weeks. The UTIs and antibiotics took a lot out of...
  6. nona

    Breathing Differences

    I had a very similar post a while ago. I was told it's the inevitable Buddha belly that happens when our ab muscles weaken.
  7. nona

    SupraPubic Catheter

    I sure wish I hadn't waited so long. These UTIs and antibiotics are brutal.
  8. nona

    anxiety, quick progression and Sjogren Syndromes

    I also question the advice to postpone non-invasive ventilation. Lung function tests should be able to discern functional need vs anxiety induced.
  9. nona

    anxiety, quick progression and Sjogren Syndromes

    Laurie, could her dry mouth also be med-related (or anxiety) and not Sjogren's?
  10. nona

    SupraPubic Catheter

    I have a consult for the same in three weeks. I was reluctant to have surgery but after seven rounds of antibiotics in five months, I can't wait to ditch this foley catheter. The person I remember having it was doglady. I know she had UTIs afterwards but she still souded happy with it.