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Waiting and scared

MamapleaseMMamaplease Posts: 7
edited 06/11/2012 - 8:55 AM in Depression and Coping
Hello all. First, thanks to anyone who reads this and decides to respond.

I find myself in the position of waiting to go into a wheelchair. Due to a host of reasons beyond my control, surgery is not an option for me and the prognosis is grim.

I am scared; angry; depressed; envious of others; grateful it's not worse; worried about my disabled husband and learning disabled child; feelings of despair and overwhelming fear of the future have my mind clouded right now. Insomnia is my constant companion.

I am still working right now; even the doctors don't know how. According to their exams and tests I should have been in that infernal wheelchair several years ago. I consider it a gift from a higher power that I can keep earning what little I earn and still have some independence.

I need to file for SSDI but feel that it would be "giving up" this struggle I've had for over 15 years. Yes, I'm proud and don't want charity.

I know that there are hundreds of others just like me on this and other forums, and I would just like someone to talk to who can really understand how I feel. I am quite isolated because of my home life and even though my husband tries so hard, he just doesn't get it.

If anyone would like to talk, I would greatly appreciate the opportunity to communicate.

Thanks and God Bless!


  • HI Barbara,
    Well, life sure does give us more than we can handle sometimes... I'm so sorry you are in the position you are in, but you have come to the right place for support and help. It's hard for people, not in the situation to really understand what it is like, when the body just does what it does... And with a hubby and child, it doesn't make things any easier, that's for sure..
    I myself, am 58, and have just gotten SSD only 5 weeks after applying...Guess those MRI's and other test results told the story with no question. Luckliy, my kids are both on their own, so that was not a concern, but the feeling of finally giving in to the body, was a hard decision... Though I have only been able to work part time for 15 years, at least I felt connected to rush hour traffic! Had a reason to get up, "put on my face", get dressed and go into the world everyday, to talk to others and feel like I belonged somewhere. Even the adjustment to staying home, is in fact, an adjustment.
    Was out last year with 3 surgeries, and am now 12 weeks post op from an anterior and posterior cervical fusion. Got laid off when I went back to work last November...last day was Dec. 31st. I tried so hard to get better, then to be told I'm done at the end of the year was hard to deal with, but I did understand their point of view.
    My lumbar spine is shot, no surgeries can be done as the degeneration is too wide spread, and they would have to fuse 7 vertebrae and insert rods...
    which they are unwilling to do, as it's too many and would cause more problems. So I, like you, am hoping things at least stay the way they are, as there are no other options for me. Wheels could easily be in my future also... but I'm hoping not to have to go there..
    Please keep us informed of how you're doing, and if you need to vent, or whatever, this is the place to do it, any time of day or night. I will be thinking of you and wishing you well..
  • Hi Barbara,
    So sorry to hear you are feeling so down. I'm finally having a good day mood-wise so I thought I would pop in to say it does get better, even if just for a little while. We all have bad days and this is a great site with some really amazing people who are willing to listen and talk any time.

    I'm up most of the night and day as well with insomnia and worry. Probably like most of us here. Don't feel alone. I know it's hard. Take full advantage of the good days. I think the waiting games and the not knowing what's coming next is the hardest part. Everything seems up in the air all the time.

    There are so many good people here to talk to that it helps to know you aren't all by yourself in your struggles and we do 'get it'. I might be losing my internet connection soon, but if you ever need to pm someone to vent I'll be checking back as often as possible from the library.

    As far as the SSI/Dis, I would go ahead and apply as soon as you can with a good attorney (you don't need money up front). The process can take a long time so the sooner you get it started the better. It's not charity, you paid into it the entire time you worked through FICA.

    Hoping you have better days soon (and all of us as well),
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  • Welcome to Spine Health!! Sorry you had to join us, but you found the right place for help, support and understanding!!!

    I had to retire due to my spine/nerve issues, so I understand where you are at. It is indeed frustrating, yet relieving when we don't have the limitations per our doctors!

    As for SSD and such, please... it is NOT charity, you paid into it, and you EARNED it if needed! Yeah, it bites to be told you are officially disabled, but at the same time there is a 'warm and fuzzy' that you have support thanks to years of paying into the system.

    We are here for you, please let us know how we can help. Gentle, understanding support *HUGZ* for you and your family.

    Again, Welcome aboard!!

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • I'm sorry to hear you are having a hard time, and I wish I could say some magic words that would make it all better. I can understand the frustration you are feeling, when it feels like the whole world is coming down around you. I've got my own situation going on at home, that is stressing me out to the max and has made my depression kick into high gear. I will keep you in my thoughts and prayers and wish you the best in your life.
  • SavageSavage United StatesPosts: 7,385
    You sure are having a lot going on in your life.
    you must be exhausted!
    I can relate to the difficult decision process to quit work and the feeling of charity by accepting the SSDI.
    I have been receiving disabiliy benefits for over 2 years and now on Medicare.

    Having the ability to maintain a roof over my head and take care of my physical..the pain..the insomnia..and all that involves.. and emotional needs with doctors and therapists..priceless. I got over the guilt and am grateful that my working years gave me this benefit.

    But it sure was a process with the thinking. For me, realizing I needed to take care of myself.. noone else will, that motivated me to do whatever was necessary.

    Also, noone can predict the future. A friend of mine, 53 years old, reach a period in life where she needed the wheelchair.I know nothing...but it seemed her body needed to rest..like reboot..and after a time..she was able to go back to the cane.

    Please stay in touch. You have found friends here!
    Honorary Spine-Health Moderator
    Please read my medical history at: Medical History

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  • Thank you for all of your replies. I can't even say what a weight you all have lifted just knowing that there are people who really "get it" and are supportive even when somebody needs to blow off steam.

    I think I really have found the right place after all.

    I'm not on here much - sitting in a chair is hard, as you all know - but I will check in every time I can and, hopefully, try and offer some support for anybody who needs it.

    Thanks again. I feel really isolated here at home, so knowing that you're all out there is a real comfort.

    Take care!!
  • SavageSavage United StatesPosts: 7,385
    ... I know not everyone has an extra $250.00... and my budget is squeeky tight... but I would go without food if I had to replace my little netbook.

    I keeps me connected to you guys, of course :).. but when I'm stuck in bed..I can still "connect" ..AND.. I was pleasantly surprised when I found it has.. like the ability to read it to me..etc..but what I use all the time..is the keyboard on the screen.

    There have been days I can't even move..and that little feature has been a lifesaver.
    I use it to connect to movies too..of course :)

    Honorary Spine-Health Moderator
    Please read my medical history at: Medical History

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