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Thread: My dad died and I am sick of being disabled

  1. #21
    Quote Originally Posted by Sarafino View Post
    Maybe someone else can relate. Most of the time I am ?ok? with being disabled. When shit hits the fan I am not ok with it at all. My dad died on Aug 7th. I knew it was coming, but still. I can?t do what I would want to do in the aftermath. I can?t go on a solo road trip, or go anywhere by myself, really. I would have wanted to go on a walk about. Instead I am in my room, looking out the window. Occasionally I look at nature photos online. I feel so trapped. My condition is degenerative, and it?s taking the use of my hands and arms now. Stress makes it worse, so I am feeling weaker that even a few days ago. To make things even worse (they can always be even worse) my dad died the night before he was to sign paperwork setting up a special needs trust for me. So now it will be years, lawyers will be involved, hopefully I won?t lose my Medicaid, etc. My disability has even infiltrated this. I am so fucking sick of it all.
    I too am sick of relying on a chair and other matters.
    What I am not sick of is seeing joy in life around me. The company of close friends I have. Warm sunny days. And more.
    I am sure that we all understand something of what you are experiencing.
    I figure that life is mathematics based; it is a sine wave that can have different amplitudes and frequencies. Hot and cold. Ying and Yang. Day and night. Winter and Summer it all has balance and the trough can seem deep but with inner strength, time and love we can climb out of it. These feelings may return deeper or shallower, who may know(?).

    Life is a sine wave.
    Last edited by slow_runner; 08-16-2018 at 05:02 AM.

  2. #22
    Senior Member Sarafino's Avatar
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    SW Colorado---chair user from nerve disorder
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    I am doing a little better. I am fully aware of mouth painting and follow tons of mouthpainters on Instagram as they fill me with hope Also, I have been in therapy for two years and take anti depressants and anti anxiety meds. Mostly I do ok, but when “other stuff” happens I get overwhelmed. I think because I am already barely keeping myself afloat. With a degenerative condition you are in a permanent state of grief, at least for me. It’s a lot to cope with in and of itself. So in a way grief and loss are familiar to me, it’s already my life. I have dabbled in 3D printing but honestly I am burned out on sculpting after doing it for 25 years. I think things will be better for me once I am on SSDI and can relax a bit on the whole money thing. I won’t be able to apply until January as my business needs to be wrapped up first. Even tho I haven’t sculpted in almost a year people are still making payments on that last sculpture, so that needs to be tidied up.
    chair user since 2009 from a neurological disorder

  3. #23
    I hope you have some pictures of your sculpture works and that you will consider posting a few of them on this site. I'd love to see your work.

  4. #24
    Just wondering if you should go ahead and apply for SSDI, as the program does allow one to earn a level of income and still get it. If you find out the monthly income allowed, perhaps it would be worth considering an adjustment to monthly payments your customers are submitting? I think it takes about 3 months to begin receiving SSDI, and then you receive Medicare after 2 years. (Sorry, I'm not up to date on this, but it's worth checking out.

    I, too, would love to see your work.

  5. #25
    Senior Member Sarafino's Avatar
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    I can not express how much all your replies mean to me right now. It might be wrong, but for me there is nothing else like relating with other chair users, with people on my level (that?s butt level, right?). According to my accountant I can?t apply until my business affairs are mostly shut down. She said they will take my business profits and divide that by 12, so for this year I am over SGA. I guess it?s different when you own a business. I have reduced my salary to be below SGA, which relflects how much I actually work (not much). We went to dinner r with my aunt and two of her friends last night, and once they heard I had been a sculptor that?s all they wanted to talk about. It was fine, but for me right now it?s just another huge loss and pit of sadness. Anyhow, here are a few pics of my sculpture.
    Attached Images Attached Images   
    chair user since 2009 from a neurological disorder

  6. #26
    These sculptures are absolutely beautiful, Sarafino. Such power and grace.
    MS with cervical and thoracic cord lesions

  7. #27
    Thank you, they are beautiful.

  8. #28
    Senior Member ChesBay's Avatar
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    Beautiful work!

  9. #29
    Stunning
    I have had periodic paralysis all my life. I lost my ability to walk in 2011 beginning with a spinal block, which was used for a hip fracture caused by periodic paralysis.

  10. #30
    Senior Member
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    Beautiful!

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