Viewing 7 reply threads
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    Posts
    • #29827
      Alyssa Silva
      Keymaster

      For the past month, I’ve been getting iron infusions and haven’t been tolerating them so well. Between that, being in constant contact with my doctors to manage symptoms, and managing all my other SMA-related stuff sometimes I feel more like a chronic patient than a human being. Do you know what I mean?

      Do you ever feel that way, too? How do you manage these feelings?

    • #29844
      Ari Anderson
      Participant

      Alyssa, I feel you. I was basically feeling the same way two weeks ago when I had my surgery and the weeks leading up to it. I was in so much pain from kidney stones along with a bad respiratory infection. My nurses at home had to work so hard to get my lungs clear enough so that I could actually go to the hospital and have my kidney stones surgically removed.

      I felt like I was almost losing my humanity. Then I kept being reminded by how much people love and care for me out there. The outpouring of people who told me they were praying for me and asked how I was doing was amazing!

      It showed me that all the people that mattered saw me as a person and not a patient. The only person that was seeing myself as a patient was myself. Once I saw this, I changed pretty quickly. Hope that helps.

    • #29849
      Alyssa Silva
      Keymaster

      Thank you for sharing your vulnerability with us, Ari. And I’m so sorry to hear that happened. Your perspective is exactly what I needed to hear so I appreciate this so much. A respiratory infection and kidney stones are a lot to deal with. How are you feeling now?

    • #29850
      Ari Anderson
      Participant

      Alyssa, I’m feeling great both respiratory and kidney wise now! Thanks for asking:)

      I’m glad that what I said helped you. I love it whenever people say what I need to hear. It makes a huge difference.

      • #29860
        DeAnn R
        Keymaster

        So glad you’re on the mend. Kidney stones are no joke. Respiratory issues on top of that must have been miserable. I’m glad it sounds like you have a great support system of family and friends. Did it take a while to recover from surgery? I’m guessing maybe it was such a relief to have the stones gone recovery was a piece of cake.

    • #29852
      Alyssa Silva
      Keymaster

      So happy to hear you’re feeling better Ari!

    • #29861
      Ari Anderson
      Participant

      DeAnn, yes, compared to everything I had been through, recovery from surgery was a piece of cake. I was well enough to be discharged from the hospital after just one night.

      However, since I had a rebound of my respiratory infection after the surgery it took me about a week to ween off the ventilator at home. Now I’m back to just needing my ventilator at night, which has always been my baseline.

    • #30093
      Susana M
      Participant

      Ari, the genius in what you said is that you recognized how you put yourself in that position, you saw yourself as the patient with all that comes with it: the uncertainty, the powerlessness, the preconceptions, the fear, the actual crisis itself, all placed on the altar of medicine while looking for a solution.

      It’s so easy to forget that what we bring to the table defines our experience, defines how we allow ourselves to experience everything. I’ll say one thing: people with SMA are sassy AF fighters. God help you if you get in our way whether you’re an insurance company, our own fear, or SMA itself.

      Crack bone, suck marrow, be compassionate with yourself and decide who you are in the equation.

    • #30094
      Ari Anderson
      Participant

      Susana, I loved how you put that! I had someone basically get in my way yesterday. He totally doesn’t know who he’s dealing with!

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