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Thread: I hate my "new" life

  1. #11
    Quote Originally Posted by jody View Post
    your broken heart will heal hon.
    It would hurt your family.

    your normal is going to have to change.

    Envy is useless and self destructive, However may be self motivating too.

    something can be done for your UTI.

    Also for your pain.

    Im having to adjust things again, because like you, I can no longer care for my needs since my physical situation is changing. Im more than happy to share what I have learned in my searches for ways to keep my life liveable with what I have.

    what are you doing for pain?
    what for uti?
    and what are the things you can no longer do for yourself?
    I'm seeing a Pain Management doctor and have tried all sorts of medications, even Ketamine infusions, nothing seems to even dull it. The pain is a big impedance for me.

    This is my 4th UTI in 4 months. I'm on oral Levaquin but I don't know if it's working.. I'm still pretty spastic and nerve pain is still increased. I have been sick since August with one thing after the other.. UTIs, C. Diff, Cellulitis.. I am beat down.

    I can't drive (yet), my transfers are still shaky using a sliding board, so haven't advanced to pop up transfers yet, so this affects everything in daily living.

  2. #12
    Quote Originally Posted by Donno View Post
    X2 on working and keeping occupied, one of the big benefits for me is that when I am busy, it is much easier to ignore the pain.
    Very very true!

  3. #13
    Quote Originally Posted by t8burst View Post
    I am three and a half years out and SCI sucks, there is not doubt about it. But things do get better as you adjust and learn how to manage things better. What can you do? You mentioned family, they are great. Not to care for your SCI but just to be family, watch TV with, play chess, go to the movies, whatever. Pain sucks and you should be aggressive about getting it treated, it took me almost 3 years to find the right mix of meds to make it tolerable (it will never go away). Lastly keep busy, I work (I write software for a living) but even if I didn't work I would still either be writing a game for Android or taking online classes. Your biggest enemy is an idle mind.
    The problem is that my family is 4 hours away in North Carolina. They come to visit and when they do I don't want them to leave. It breaks my heart.

    I am working part time remotely but lately I've been so apathetic about life in general I don't even open the computer some days. I do IT Consulting and have a lot of work to do and I used to enjoy doing it, it occupied my time.

    I am depressed, definitely. I take Cymbalta for it but it hasn't been so good at keeping it at bay lately.

    It's hard to ignore the pain for me. Even when I'm involved in something, the pain is still attacking me.

  4. #14
    Quote Originally Posted by smashms View Post
    The clergy are good to talk to if he has someone who he feels close to. They are only there to listen. He could also talk. To a counselor or a psychictrist as well if he chooses. He just needs someone who will listen to him. It could be anyone.

    Quote Originally Posted by jody View Post
    easy there.
    .........I disagree that clergy is bullshit. I was visited by the local catholic sisters, as well as a mennonite group, and they were able to get me involved with some local things like, visiting nurses, Hot meals when I could not make my own food, and a food cupboard that delivered when I could not get there.

    they dont have things like that where I moved.
    Okay, fair enough, I concede that clergy without prosthelytizing can be beneficial. My problem is when these types come to people when they're vulnerable and fill their heads with their own superstition.

  5. #15
    Quote Originally Posted by jbridges9 View Post
    This is my 4th UTI in 4 months. I'm on oral Levaquin but I don't know if it's working.
    It's likely not. What it could be doing is controlling the infection somewhat, but not ultimately killing it.

  6. #16
    Moderator jody's Avatar
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    I was wondering how cymbalta worked. It was prescribed to me but my insurance would not cover it. It was promising for nerve pain.
    Are you taking it as directed? and is it at a theraputic dose?

    I read in another post you have pseudonymous. That is a mean bug. it might take some efforts to treat it.

    What if you moved closer to home? I moved to sc a couple years ago, and went back to pa to visit family, am I homesick for my peeps.

    we dont live in legal states, but I was able to try some medical MaryJ with properthes for pain control, and suprisingly, it worked so much better than I expected. that gives me hope for future pain control at least.

    just hang in there now, ...Im not trying to blow sunshine up your para keester, sci sucks. some days suck more than others, but in general life does get good again.

  7. #17
    It is hard, no doubt about it and I feel for you. I know you're recently injured and the early days are the most difficult, as you learn to adjust and find new ways to live. It does get better with time and experience. I wish you could get a break from the pain and the UTIs. I think that would go a long way in getting you to a better place. Continue to push your physicians to find ways to control the UTIs and also pain management. These are things that we all have struggled with from time to time and we have our various ways of dealing with them.

    I also work in IT and getting back on the job was probably the thing that set me on a good course. It was a break to think about something else other than my injury and recovery. I found that when I worked, I noticed pain much less and had more energy. It sounds as if you have a work at home opportunity, as well as the ability to work your own hours. I would encourage you to keep at your work, even if you don't feel like it at the moment. When you tackle something that is familiar, the new, unfamiliar physical condition will move more to the background. Having good and do-able employment will help you in so many ways.

    I wish you the best and hope that you keep us updated on how you're doing. It is a difficult road, but that only means that it's hard, not that it's impossible.

  8. #18
    Quote Originally Posted by jbridges9 View Post
    The problem is that my family is 4 hours away in North Carolina. They come to visit and when they do I don't want them to leave. It breaks my heart.

    I am working part time remotely but lately I've been so apathetic about life in general I don't even open the computer some days. I do IT Consulting and have a lot of work to do and I used to enjoy doing it, it occupied my time.

    I am depressed, definitely. I take Cymbalta for it but it hasn't been so good at keeping it at bay lately.

    It's hard to ignore the pain for me. Even when I'm involved in something, the pain is still attacking me.
    Pain sucks the life out of you, I can sympathize. UTIs suck, I hope you get them under control. I don't know your level but a year after my accident I was still using a board to get in and out of my car, two and a half years later I am transferring in/out without brakes on an icy parking lot (with no board). You will get better skills both physical and mental as time goes on.

    My last suggestion is what I am going to do now, download a book onto my kindle and read. Nights for me usually suck, pain is at its peak and the only person I care about is asleep (my kid) so I read. Lately it has been military sci-fi, books with space marines, power amour and lasers weapons.

  9. #19
    Quote Originally Posted by t8burst View Post
    Pain sucks the life out of you, I can sympathize. UTIs suck, I hope you get them under control. I don't know your level but a year after my accident I was still using a board to get in and out of my car, two and a half years later I am transferring in/out without brakes on an icy parking lot (with no board). You will get better skills both physical and mental as time goes on.

    My last suggestion is what I am going to do now, download a book onto my kindle and read. Nights for me usually suck, pain is at its peak and the only person I care about is asleep (my kid) so I read. Lately it has been military sci-fi, books with space marines, power amour and lasers weapons.
    I am T3, and thank you for the replies. I hope I get the UTIs and all other infections under control. I am super spastic (to the point I can feel the tightness in my chest/abdomen..even tho I can't feel anything else there!) when I have a UTI, and my neuro pain goes even higher.

    May I ask what you are doing for pain management, if you haven't already told me in another post

    Jason

  10. #20
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    Try solve 1 simple thing at a time. And I really mean SIMPLE. Break down into all the pieces it takes to do just 1 think and work on each 1. I was always trying take giant steps. More often than not fail and get pissed off. Somehow I broke it al down. I just passed 10 years and now attempting to get my driver license back. For some reason I changed my mind to thinking "I will get there, but I do not know when." Also told myself "if I stop trying, it will not be given to me."

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