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Thread: Numb and emotion in physical changes. life continues

  1. #1

    Numb and emotion in physical changes. life continues

    Not the conversation I expected with my doctor. Numb in emotion and carrying on and also appreciate my doctor's candor and care. Life continues and life is beautiful with good things happening. My husband and I not necessarily prepared. We watched a movie and carried on with a normal evening.

    I had posted asking a bit about bruising a bit ago and about a couple of things physically.

    So, I had my appointment with my doctor. She had ordered a chest x-ray and Pulmonary Function Testing. First was clear, and the second came back with moderate to severe. the treatment they gave me and redid the test did not help which told them it is not in my lungs. My chest muscles or respiratory muscle is not able to expand and contract properly.

    Treatment is first steroid infusions. In 2015 it kept me from having a breathing tube.

    But the conversation turned to asking me what I wanted and what I would do if I couldn't swallow/eat. or breathe?

    what would I do, what would I want?

    I said, yes to both feeding tube and whatever to breathe and keep going.

    Emotionally I am numb still today.

    As changes happen? any of you have experience to share? How did life and emotions carry on for you?

    Don't know whether this is best for life? Care? or SCI/D category best?

    Thanks, C

    And, I look forward to next week. I am going to my first SCI support group.
    Non-traumatic SCI. Art, Poetry, and the Great Outdoors; these are my passions. My motto: Paint much love, always ~ Connie

  2. #2
    Today is my "unhappy anniversary", as I call it. 68 years paralyzed by Polio. Just wanted to let you know I worked and functioned quite well until pneumonia 7 years ago - my chest muscles had apparently gotten progressively weaker and I was unable to produce an effective cough - 5 months of hospital and several other complications unrelated to breathing. I was discharged with a bi-pap machine for overnight use due to my new diagnosis of 'central apnea' ('sleep apnea' different). My lungs remain clear, but the chest muscles won't get any stronger. I'm now on ventilator (face mask) overnight, and small tanks of oxygen strapped to the front of my chair, for daytime assistance with oxygenation.
    Looking back, all this was slowly progressive and I guess can be expected somewhat as I'm elderly. I'm still very active. I took pottery classes for 16 years and slowly set up equipment to continue this at home, including a kiln, tabletop wheel, molds, etc. A very supportive husband, family, and my hobby have helped me travel over bumpy paths.
    Hope you let us know how you are doing. I'm hoping you have a trusted pulmonologist, and question and research everything the doctor's recommended.

  3. #3
    Senior Member
    Join Date
    Aug 2004
    Location
    So. California
    Posts
    1,026
    This sci life is a continuous journey. Ups and downs, many bumps along the way. As the mother of an injured son, all I can say is that I prefer to look back and see just how far he/we have come. I never look too far ahead, even after 13 years. I do believe a cure is in our future. However, you can't put your life on hold you have to keep plugging along. I looked at your profile and I see that you are a poet. I just posted a video of my son (Life Forum) performing one of his poems in San Diego. Spoken Word might be something you would enjoy if you aren't already involved in it. I wish you well and keep up the good fight!

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