Muscular Dystrophy News Forums Forums Support Groups Adults​ ​With​ ​Muscular Dystrophy Choosing Between Working and Having SSI Benefits

  • tina-pineda

    November 1, 2022 at 3:00 pm

    I currently work and just recently started taking Mondays off. It is getting harder and harder to work especially with having so much pain. At the end of the week, I’m exhausted and my weekends are spent in pain and discomfort and a lot of tears. Doctors have diagnosed me with osteoarthritis and we’re hoping the medication they have me on gives me some comfort.
    SSI sounds good on really tough days but I do enjoy working and I can’t seem to bring myself to stop even if it’s beneficial.

    • danielle-dani-liptak

      November 16, 2022 at 3:20 pm

      I recently had to work my regular Sunday job at a local boutique but there was a special convention in town so there were more than the normal amount of shoppers. Five hours later I am asleep by 8 pm, and for the next two days I am in PAIN! It is so hard to imagine being able to work 9 to 5 again in an office without being able to rest, lay down, take my time, etc. As much as employers say they will accommodate, most work is pressure, stressful, occasionally fast-paced,, and can throw curve balls here and there. My body just can’t work “normal” hours and jobs. I don’t want to stay on SSDI forever but I am too anxious about giving up my medicare or making too much money.

      • leah-leilani

        November 18, 2022 at 9:41 pm

        I know exactly how you feel Dani! I feel that way just after hanging out with my friends, so there’s no way I’m able to work 9-5. You’re right, employers and companies expect so much from their workers making it so stressful. And there can be a lot of guilt attached when we’re constantly in a state of recuperation. Our bodies are our number 1 priorities, not our jobs unfortunately.

  • leah-leilani

    November 8, 2022 at 9:30 pm

    Tina, I hear you! Pain makes doing anything 10x harder. I think one of the hardest part about SSI and work is that there is no in between. You can’t work only when you feel well and you can’t make a living working only a few hours a week which is that SSI allows.

    I do hope the medication helps. I have fibromyalgia so I experience some pain too but not since I was put on the right meds.

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