Disabled & Hating it - page 2

by cJoeyRN 2,111 Views | 21 Comments

(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... Read More


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    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.
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    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.
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    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.
    cJoeyRN and FranEMTnurse like this.
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    I am not technically disabled, but I do have a disability. I have a mental health condition that makes it very difficult at times to work and be productive, and I've suffered some pretty serious losses as a consequence. But I'm not in a position where I can afford to go on SSDI, even if I needed to---my husband has cancer and we both need the health insurance my job provides, in addition to my salary. There are no other options, no Plan B. Just work as long as I can and hope I can hold it together long enough to retire.
    cJoeyRN and Nola009 like this.
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    Thank yoI've. encouragement. You are so fortunate have a spouse. Af1ter I divorced at 30, I never found anyone. Then, I threw myself into helping one of the people I mentioned. (Don't want to get too specific-though I would love to talk about it-was the BEST part of my life. If you like, I could talk about it in an email, or private post.) I knew I had bad genetics-but, like you,thought I was too young to be as bad as,my Aunt & Mother. And, with so much time to reflect, I have
    realized they DID NOT get this bad as early as I did. Then, I realized-they didn't pound concrete floors for 8, 12, 16-even 21 hours (on one occasion).

    You're right-I am depressed. And have fought that most of my adult life. But-you'd be surprised, or maybe not-at what is said after patients are put to sleep. So, I had to hide that-I thought. Eventually, all that stress makes you even more physically sick. When a sibling started having spinal problems 30 years later than mine started-I felt cheated. And angry. I gave so much-and have been left unaided. Families can be complicated! ;-)

    (Sept.13,2014) Again, thank you! I've been sitting here all day-freaking out because my right foot was colder, and had less feeling than yesterday. I need lumbar spine surgery-but I don't want it. I'm having symptoms above the plate that is at C4-7. And, there's no one left that will take care of me. The only one that would is the one I helped, but died too young. Now, I'm COMPLETELY alone. Family ALWAYS came first--and I adored each and every one of my nieces and nephews. But, for whatever reasons, none of them want to include me in their lives. I THINK I know what was said behind my back. And, though it's--for the majority of what was said--untrue, not a single one of them have asked about MY side of the story! My WONDERFUL Counselor, has (after a few years, and a LOT of work! ) finally convinced me of the REAL truth of the matter. It's THEIR problem, NOT mine.

    And, Esme12, after ALL those long days--when I wasn't even on call--I was thrown aside like trash, too! THAT REALLY hurt. I know you all are right-I need to keep trying. But, I just simply CANNOT anymore. I'm too tired, the pain-physical AND mental-are just unbearable anymore. WHAT is the point? I DO have a lot of people who depend on me--in cyberspace. But, NO ONE in real life. The way I'm existing-because what I have IS NOT a life-I NEVER would have imagined. Can BARELY get the trash out-let alone clean ANYTHING! NO, I'm NOT going to off myself. Promised too many people who depend on me (online), that I will be here for them. But, I DO really want for this to be all done and over with. The meds are barely helping now--I sit here and talk to God all day, pleading for:either some help with things, or to take me to where my parents, Grandmother and sister are. Because, this just gets worse by each passing day. I HAD a good life--great vacations and experiences. But, in the last 4yrs, NOTHING has changed-gotten better, NOTHING like that. I'm just too tired of ALL of this. Unless you have been here, you simply CANNOT imagine what you will put up with. And, it most CERTAINLY isn't anything good.

    Yes, there ARE still things I enjoy. And, on my RARE good days, I do them. And feel guilty because I haven't gotten any cleaning done. I'm hurt, and I'm tired. Tired of banging my head against brick walls looking for assistance. And, YES--YOU DO get told, "You make TOO MUCH MONEY. " I can't qualify for any program that MIGHT help me out of this TRULY horrible place I'm living in, help me do more than: go to Dr. & Dentals
    Last edit by Esme12 on Sep 13 : Reason: formatting
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    Trust me I have those days. The 20 plus pills a day the pain. The treatment from other people. It STINKS...big time. I hate what I have done to my family. I hate that I have to use a wheelchair even if it is electric. I hate the burden I have placed on my family and my children who depended on me.

    I fight everyday to get out of bed. Get dressed. There are days I can't comb my hair. But I still look for the glass to be half full. Suicide is NOT the answer. EVER. Please reach out if you are feeling like you wish to hurt yourself somehow. WE CARE!
    No matter what problems you are dealing with, we want to help you find a reason to keep living. By calling 1-800-273-TALK (8255) you’ll be connected to a skilled, trained counselor at a crisis center in your area, anytime 24/7.
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    appts., the pharmacy. Never mind, my stupid "smartphone" takes too long for me to finish.
    Actually,I HAD finished-but I took too long. And, if I'd been permitted to post that-you'd UNDERSTAND that I am NOT suicidal. But, never mind. I found out, yet again, that I "Children should be seen, & not heard." As my Mother always told us. You see, sometimes, there's a reason WHY someone takes longer to do something. I thought that understanding MIGHT be here. Guess I REALLY need to keep my anxiety and depression in check until I can talk to my GREAT Advanced Practice Psych Nurse's appt.'s. I don't think I'll bother any of you, again.
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    NO that is in no way what I meant!!! At all! You completely misunderstand!
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    Quote from cJoeyRN
    appts., the pharmacy. Never mind, my stupid "smartphone" takes too long for me to finish.
    Actually,I HAD finished-but I took too long. And, if I'd been permitted to post that-you'd UNDERSTAND that I am NOT suicidal. But, never mind. I found out, yet again, that I "Children should be seen, & not heard." As my Mother always told us. You see, sometimes, there's a reason WHY someone takes longer to do something. I thought that understanding MIGHT be here. Guess I REALLY need to keep my anxiety and depression in check until I can talk to my GREAT Advanced Practice Psych Nurse's appt.'s. I don't think I'll bother any of you, again.
    I am in your position. The meds, the illness, the appointments, the MD's who do NOTHING. I just wanted you to be safe.

    I have days when I am too through with being sick. I have days that I cannot sit up without help. I KNOW where you are. ((HUGS)) I live there.
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    cJoeyRN, you're attacking a person who is offering you compassion and understanding. Back off a little, because she's really in a position to get it and sympathize with you.
    LadyFree28 and OrganizedChaos like this.


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