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Thread: When does the pain subside?

  1. #31
    Member NANDA's Avatar
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    Hello everybody
    I am new yet into SCI as a caregiver but I will try to describe my experience.... what do you feel???....Pain, sharp, awful, pain, anger, fear, loss, guilt, Why I did not tell him to be careful in the pool?, ( who would have thought that he was going to be in a pool when there was such a beach??? He was in an Island near to the cost of my country!!!) the feeling of complete unability to do something else, why he went to that stupid trip?, why he had to jump like that in a pool?, so much pain, that it is really better not to remember that moment, the words Stick wrote pretty much described the time in the clinic, the nurses, the doctors, the infections...everything, Is he really in good hands?? too hard to explain in words, too big to describe.
    The pain is there, there always be, but hope is there also for us, that is what keep us going, I am a doctor, my colleagues gave me or my family NO hope at all, " of course there is faith" one of them said...Imagine the rest...
    His diagnosis at that time was ASIA A "complete".
    OF course there is faith ( lots), and of course there is hope(lots), at that time my brother was just going through his awful pneumonia among other things.
    Now the situation is somehow "taken care of" if you could say that... we are tired sometimes( most of it), but we love each other deeply and as Stick said we just do what we are have to, and because we want to, we are a family and we are together in this, that is for me what it means to care and love a person, being there. I now my brother will never be alone. I now I am not and never will be.
    When I first found this forum I read a phrase of Dr Wise that really made such a diference for me....I wanted to believe it then with all my heart and I do believe it now and will hang on always on it... "Recovery is the rule not the exception in SCI".
    Now, my brother is a 17 y.o. ASIA C C5 3 months post SCI.
    I am sure also there will be a cure, dont know when, but it seems to be very close.
    Forgive my english...
    Best wishes to all,

    NANDA

  2. #32
    soulmate, there's no way your post is getting moved; you're a caregiver, and the issues you brought up are so appropriate here; we all want to be nurtured and taken care of, and have our hurts healed, too.

    So, know you have a home here, that's what we're for ((((((((((HUGS))))))) - Jackie

    PNP - quote "I can't help wondering what would have happened if I'd been home- would anything have gone differently?" Don't go there, sweetie, it doesn't do any good, and just ties your stomach up in knots. We can, all of us, 'what if' ourselves to death; I made that road a closed road a while ago, and moved on. Our favorite expression around the house right now is, 'It is what it is'. Period. We live it, deal with whatever pitch is thrown to us, and try to move on with smiles on our faces.

    Nanda - What can i say other than you're one of the most compassionate doctors I've ever met. I would feel so comfortable and cared for being your patient - even tho I don't speak Spanish!

    _____________
    Tough times don't last - tough people do.

  3. #33
    Senior Member KDK513's Avatar
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    Funny thing, Marmalady, we use the exact same expression here, usually followed with a shrug of the shoulders. I find that smiling actually makes me feel better. Our daughter did a reearch paper which she titled the "Healing Power of Humor", powerful and amazing stuff.

  4. #34
    Wow, what memories. Boy have many here grown over the last 2 years. Lives have changed even more, many for the positive.

    To all who posted, thank you for the gift of insight. I will put it in my pocket and take it to work with me tomorrow. It is a gift I can share with others.

    And Stick, how powerful, true and sad. It brought tears streaming to my eyes. Your wife is one lucky lady

    "A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles"....C. Reeve 1998


  5. #35
    Thank you for sharing Kate!
    Those moments when I realize that my life partner has been hijacked by SCI are still a shock and I hope I get better at dealing with them. I'm also hoping/praying that those hijack moments begin to get further and further apart!
    It's a 'slap in the face', for sure, and your illustration sums it up eloquently. I'm so sorry about your Dad! My mom died unexpected due to a bowel rupture two weeks after my bf broke his neck! He barely remembers....but loved her so much! I don't really understand why catastrophe like these happen sometimes in tangent. I can tell you that I found out that I am a whole lot stronger than I thought I was!
    Jackie- Thanks for the hugs and understanding that I need some encouragement to keep going! You consistently pipe up and let me know that I belong here! ((((((HUGS)))))) right back at ya!
    I really felt better after posting this yesterday, and I was able to talk to the bf about my feelings..... and he heard me.... and all that........ So I guess, like everything else, pain ebbs and flows and that's the best we can expect. I just need to take advantage of the good and let go of the bad. Easier said, than done!
    Soulmate

    We are all faced with a series of great opportunities... Brilliantly disguised as impossible situations.

  6. #36
    Member NANDA's Avatar
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    Marmalady:
    Thanks, I would be happy to be your Doctor!!! , I just hope to be able to make a difference from now on, i have always consider that we Doctors should have limits and we Do not know everything as much as we may want to.
    I will work on it.. there is much to do for patients and caregivers with this type of pathology.
    I could teach you some spanish either!!!
    Take care...

    NANDA

  7. #37
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    Being new to SCI (my younger sister is 7 months post) I can only say that I hope it gets easier. People always think that the younger siblings look up to the older ones. That is just how it is...that is just how it works. Or does it???

    She is 4 years younger than me, but I have learned so much from her. She has taught me what strength is, she has taught me what patience is, she has taught me what loyalty is...and now I am teaching her these same lessons. STRENGTH - She feels weak, helpless, inferior...but she gets up everday and goes on, a lot of the time with a smile on her face. PATIENCE - She used to teach preschool...now I am teaching her that it is okay to take 20 minutes to put her shoes on. LOYALTY - She was always someone that I could count on...now I am the one that is always at her side.

    I hope it gets easier. But as I have told her over and over again and as I tell myself over and over again when I start feeling like it is too much...This has happened for a reason. Our goal is to figure out what that reason is. We can beat ourselves up over how life sucks so bad, how this isn't fair, how we don't deserve this, OR we can learn from it. We can celebrate the fact that my 3 year old little girl doesn't and WILL NEVER look at anyone in a wheelchair any differently, because her favorite aunt NeNe is in one. We can be thankful that this has educated our family and made us more aware of what others living with SCI or in wheelchairs go through. And we can cherish the fact that this has brought our family together, like nothing else probably ever would of.

    There are lots of things to cry about. And I think that it is good to shed those tears. But there are also lots of things to be thankful for. My sister could of died, instead I still have my best friend to talk to.

    I just try to stay positive and take one day at a time. I try and think about all of the things that she can do instead of the things that she can no longer do. And I try and do it with a smile, because life does go on, tomorrow is another day, and someday we will learn why this has happened. On second thought...maybe we already have!?

  8. #38
    Butterfly,

    What a beautiful note. I am 8 months post and a t-12 para. You put in words what my b/f has been going through these last several months when at times I was a major bitch and other times when we cried together for hours. While it is extremely difficult for us who have experienced SCI sometimes we don't realize that in many ways it is as difficult or more so for our loved ones. Your note brought tears to my eyes and I felt compelled to respond even though I am not in your situation, God bless you and everyone else that goes through these tough times with us. You are all very special people and please realize that even when we don't treat you right we still love you and appreciate everything you are doing more than you can ever imagine.

    Love,

    Cathy

    parapal

  9. #39
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    MY husband was injured 13 months ago. I still come to tears easily. There are hard days and harder days. We seem to have gotten into a routine, which helps a lot. The pain is still there for the both of us. I talk more about it then he does. I think, for the most part, it's grieving for the future that we had planned but will now never be. I hope to be able to get to a point someday, when it doesn't hurt so much, when I don't feel this tremendous knot in my gut.

    On the good side, though, our relationship is stronger and deeper than we could ever have imagined it could be. We appreciate our life together more, and are very thankful for our children and their good health.

    Stacey

  10. #40
    Member mjhopper's Avatar
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    It's been over 5 years since my accident. I cried alot at first, my husband with his sense of humor would always try to cheer me up. My husband does all of my personal care and he is great at it. I think that before my accident we were too caught up with life, he had his own business as well as myself. We didn't seem to have time to sit down and talk with each other. He told me while I was in rehab that things happen for a reason and sometimes it takes a tragic event to make you stop and re-evaluate your life. My husband and I now spend alot of quality time together and are constantly going places in our van and the most important things is we appreciate each other more.

    MJ

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