Disabled & Hating it

  1. 6 (Sorry this is so long-but-it's complicated)
    It really is true-You don't know what you have, until it's gone. I was an RN (OR) for over 20yrs. Have been disabled for 14yrs. due to multiple degenerative diseases-(of course) the major one-spinal diseases. I hurt my neck the first time, when I was still in Nursing School-an excellent diploma school. I WANT to work. The first few years of my disability-I scoured the ads for something I could do. I simply couldn't figure out what I would do the rest of my life! Sit around & wait to die?!
    Fortunately the first 5-6 years, I had two very special people in my life, who were in need of a little help. I was still capable of giving them the company they needed, run errands for them-I felt useful. They've both been gone for several years-leaving me to struggle alone. Wasn't good at making friends-my family were my friends. But, they're busy with their families now. As my conditions deteriorate I need help (SSDI doesn't go far enough-especially when you "make too much money."), because I fall through the cracks. I simply don't know what to do, or where to turn anymore. You NEVER think this will happen to you. I didn't plan for anything like this-or, for that matter, for the long term-very well at all.
    I've been trying to do online surveys to make enough money for all my bills-but they don't pay the way they did back in 1999, when I got my first computer. My Psychiatric NP said she found some sites that pay $25 and up, for their surveys. But, I've yet to find anything like that. I really don't know what else to do. I feel so very lost...and alone.
    Thanks for giving me a place to tell my story. If this helps even ONE person to: stop, think, and prepare from the very first days you begin your career-for the worst possible scenario-I will feel I have STILL been of some use.
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  3. Visit  cJoeyRN} profile page

    About cJoeyRN

    cJoeyRN has '35' year(s) of experience and specializes in 'Cardiac, OR'. Joined Feb '14; Posts: 5; Likes: 14.

    21 Comments so far...

  4. Visit  SoldierNurse22} profile page
    11
    Reading your story is a strangely familiar tale. I know many, many people like you. They have been, either by injury or illness, limited in their physical capabilities much earlier than they could have ever imagined. I can only thank you for telling us your story and encourage you to keep looking for ways to remain engaged. The one thing I've learned in my few years of practice is that no one is useless unless they want to be. You sound like you're depressed, but you haven't given up. Keep pushing back. Keep looking for ways to contribute. We here at AN, myself included, will happily support you.

    I think part of the reason your tale resonates is because as I look to separate from the service, I will likely be filing for disability. I am very, very young, and I have a chronic condition that is painful and could eventually limit my ability to work. It seems unreal as I even type it--it was unreal for a very long time until the pain became limiting in my soldiering duties and my husband began to push me to get it checked. A few other folks--disabled vets, to be specific--also came along and encouraged me to take care of it before it got out of hand.

    It's scary, that future thing--not knowing what it holds and how it could change you. But I have been gleaning what I can from folks like you, trying to take care of myself, and hoping that even if the unthinkable happens and I find myself one of those disabled vets, I can still find a way to contribute to society.

    Thanks for telling your story and welcome to AllNurses! So very happy to have you.
    icuRNmaggie, B.A.N.J.I.I. RN, fetch, and 8 others like this.
  5. Visit  VivaLasViejas} profile page
    5
    (((((((HUGS))))))) to both of you!
  6. Visit  Esme12} profile page
    9
    preaching to the choir. I have been disable and unable to work now for about 5 years. There is NO amount or preparation, unless you win the lottery, that eases the blow. It is even more difficult when your life long profession tosses you aside like dirty trash.

    Welcome to the group!
  7. Visit  LadyFree28} profile page
    6
    Welcome!!!

    As far as SSDI, I would try for it...it is NOT based on income-that's SSI.

    I have been on SSDI for six years due to a major medical near-death experience; while the physical scars are beautiful, the internal scars remain. I've struggled to maintain a stable job; my saving grace was being an independent contractor, so I can be able to continue to work and collect benefits and keep my head above water. I put one foot in front of the other.

    Also try vocational rehab as well, if you haven't found an avenue.

    ((((HUGS))))
  8. Visit  EllieBean13} profile page
    2
    I don't have much to add, but I just want to wish you (and all the others who are in tough situations) well. Big hug, and welcome to The AN Community
    icuRNmaggie and cJoeyRN like this.
  9. Visit  canigraduate} profile page
    4
    My mother struggled with disability in the last few years of her life and I know it is a hard, hard way to live. Make sure you use your circle of resources to the best of your ability. If you can get out of the house and volunteer doing things that you are capable of, try to do that to build connections. You never know who you have helped who may be able to help you.

    One of the best things that my Mom did was play to the strengths she had left. She was able to do crafty things to keep herself occupied and make a little side money. Doing these things, she could keep her bills up to date and even give gifts to those she loved and help some who were even less fortunate.

    The biggest thing is not giving up and realizing that you are still a valuable, valuable person!! My mom didn't let her disabilities define her. She didn't say, "Hi, I'm Debbie, and I can't work anymore." She said "Hi, I'm Debbie. Let me show you my grandkids and the fun we had yesterday!"

    I hope that you are able to find joy in your life. Keep looking for opportunities to do what you can and network with everyone you come across so you can have help when you need it.

    I wish you the best of luck!!!!
    icuRNmaggie, cJoeyRN, CABG patch kid, and 1 other like this.
  10. Visit  amygarside} profile page
    2
    Just don't give up. We know you can do it!
    icuRNmaggie and cJoeyRN like this.
  11. Visit  FranEMTnurse} profile page
    3
    Coming thru loud and clear. I have been disabled fourteen years, and I miss working and helping others, I miss my car and being able to drive, being able to go for a walk, and so many other things I used to take for granted. But I decided to go to plan B and accept my disability and my limitations, thankfully with home care I still am able to function and live on my own. I am so grateful for this computer, my eyesight, and hearing, my sense of taste etc.
    icuRNmaggie, cJoeyRN, and VivaLasViejas like this.
  12. Visit  Heathermaizey} profile page
    3
    I have been disabled for several years now. It is very difficult to get used to. I had a hard time adjusting from being very independent to relying on someone. Fortunately my health has improved over the last couple of years and am hoping to get off disability soon. But something that I did do when I was younger was save my money. I still manage to have fun and do fun things but I save a lot of my money. A very important thing to do.
    icuRNmaggie, cJoeyRN, and VivaLasViejas like this.
  13. Visit  mmaibaue} profile page
    0
    Dear Joey. I do understand. I am not disabled, but was married to a hard working man. He worked 6 days a week 10 hours a day for at least 20 years. Slowly his body deteriorated. What many people don't understand is what it took or should I say took away to get SSDI. If your there then you probably went through your saving, your retirement, a second mortgage and maybe your children's college fund. If that isn't enough you lost your job because of too many doctors appointments, therapy, sick days, etc. It takes a lot of loses besides the lose of your health to collect SSDI. So make no judgment on disabled persons unless you want to trade places with them for a small monthly check. To stay healthy you must be productive, you must find your purpose. Sometimes it is not what we expect, so look at the unexpected. Unfortunately my marriage did not survive but I am a better person for what I have experienced and can be a better more compassionate nurse to those I serve. Many who are disabled.
  14. Visit  OCNRN63} profile page
    5
    Quote from cJoeyRN
    (Sorry this is so long-but-it's complicated)
    It really is true-You don't know what you have, until it's gone. I was an RN (OR) for over 20yrs. Have been disabled for 14yrs. due to multiple degenerative diseases-(of course) the major one-spinal diseases. I hurt my neck the first time, when I was still in Nursing School-an excellent diploma school. I WANT to work. The first few years of my disability-I scoured the ads for something I could do. I simply couldn't figure out what I would do the rest of my life! Sit around & wait to die?!
    Fortunately the first 5-6 years, I had two very special people in my life, who were in need of a little help. I was still capable of giving them the company they needed, run errands for them-I felt useful. They've both been gone for several years-leaving me to struggle alone. Wasn't good at making friends-my family were my friends. But, they're busy with their families now. As my conditions deteriorate I need help (SSDI doesn't go far enough-especially when you "make too much money."), because I fall through the cracks. I simply don't know what to do, or where to turn anymore. You NEVER think this will happen to you. I didn't plan for anything like this-or, for that matter, for the long term-very well at all.
    I've been trying to do online surveys to make enough money for all my bills-but they don't pay the way they did back in 1999, when I got my first computer. My Psychiatric NP said she found some sites that pay $25 and up, for their surveys. But, I've yet to find anything like that. I really don't know what else to do. I feel so very lost...and alone.
    Thanks for giving me a place to tell my story. If this helps even ONE person to: stop, think, and prepare from the very first days you begin your career-for the worst possible scenario-I will feel I have STILL been of some use.

    I feel your pain. I am permanently disabled due to complications from cancer treatment. Prior to getting sick, I worked in outpatient oncology. I really miss the patients, I miss my co-workers. I miss living independently, I miss driving.

    I make some extra $$ as a blogger/moderator for an oncology website, but it's hard to go day after day feeling like you don't have a purpose in life.

    ​You're right...you never think it will happen to you.
    icuRNmaggie, poppycat, cJoeyRN, and 2 others like this.
  15. Visit  suanna} profile page
    3
    I wish I could get designated "disabled". My spouse has medical issues that require me to work and provide Rx coverage and health ins. By the time I can get her on SSDI she will qualify for medicare or be dead. Unfortunately I'm killing myself just going into work each day. If I could take the time off to get on SSDI and could still meet my spouses needs I would do it today. I'm sure I'd miss some of the satisfaction of providing for patients needs, but I'm going to end up in a wheelchair myself before I get to retire. I hope you find a path that is right for you. The important thing is to find a way of enjoying what you can while you can. That just may not be working as a nurse anymore.
    icuRNmaggie, cJoeyRN, and FranEMTnurse like this.


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