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  • Weird comments

    Hi all,

    I wanted to ask some of you if you have experienced some comments that resembled mine. I had revision surgery some months ago, and it happens that most people I see nowadays keep telling me that it's so horrible, they do a discusted face when I tell them what was wrong with my back, how the surgery went, etc. Just yesterday, my hairdresser saw me walk and sit more slowly in her chair(and the chair was broken, so no kidding I was cautious and I will be for a while, it's normal for now); and she said to me "what happened? Did they not "fix" you right or you're worse than before???!!!" with an attitude, and I know she didn't mean bad but it discourages me, my emotional state is more fragile than usual, but I'm getting better. I'm in less pain than before the surgery, and I try to remind people that there are people who had worse surgeries than me, some in wheelchairs, etc. I just wanted to ask some of you, if you get negative comments that make you feel bad, wether you've had surgery or not, and how do you deal with it? Sometimes I feel like it's best not to talk about it with people, as they look at me like I'm some weirdo who had three surgeries and they pity me(not all people, but a lot). But most people found out I had surgery from people talking, etc...

    Anyways, if you would like to give advice, or share some of your stories, I would appreciate it
    35 y/old female from Montreal, Canada
    Diagnosed with scoliosis(double major) at age 12, wore Boston brace 4 years at least 23 hours a day-curve progressed
    Surgery age 26 for 60 degree curve in Oct. 1997 by Dr.Max Aebi-fused T5 to L2
    Surgery age 28 for a hook removal in Feb. 1999 by Dr.Max Aebi-pain free for 5 years
    Surgery age 34 in Dec.2005 for broken rod replacement, bigger screws and crosslinks added and pseudarthrosis(non union) by Dr. Jean Ouellet

  • #2
    I haven't had too many negative comments but I get quite a few stares because of my brace. It is a custom molded TLSO so it has curves and breasts.
    People stare, kids stare and if anyone does ask, I just tell them, "I had major spinal fusion surgery and I get to wear this until June or longer so I heal correctly. Wanna see my scar?!" with a big cheesy grin. My scar is enormous so it freaks people out a bit.

    Before surgery was worse. I had a huge rib hump on my left side, I hunched over when walking and sitting. People were cruel. Quasimodo, hunchback, fender polisher were some of the names I heard whispered at me.

    I try not to get discouraged and I know that some times, we all just have really bad days where no good stories or uplifting words will help us feel better at all.
    I spent days crying before surgery and after, so much so that my doc put me on anti-depressants in the hospital.

    I just want to tell you, it's ok to be sad, scared, depressed, upset, angry or whatever emotions you have. This is a big deal what you are going through and may still be facing. (I've been reading your other posts)
    You are ok no matter how you feel and don't let others belittle you by telling you that other people have it worse or to get over it.
    This is you and you are the most important person right now as you heal.

    I hope that makes sense. **hugs**
    36 year old single mom of teens ages 14 & 15.
    Anterior/posterior spinal fusion on February 9th & 16th 2006 with Dr. Anthony Moreno who now has his own practice.
    Fused from T-3 to S-1 (sacrum)
    Curve pre-op = 70 degrees
    Curve post op = 20 degrees
    No pain anymore!!
    Google is your friend

    I am not a doctor and will never give medical advice. I will support and answer questions from personal experience only.

    Comment


    • #3
      Kat--I thought the brace goes under your shirt--no???? Lynne

      Comment


      • #4
        Originally posted by lelc2002@yahoo
        Kat--I thought the brace goes under your shirt--no???? Lynne
        LOL
        It's supposed to but let me explain why I wear it the way I do.
        I live in Florida. It's hot here. I cannot imagine putting this brace up against my skin or having to wear a tank top and then the brace and then a shirt over the top of all of that. Sweat to death!!!

        Also, it is very hard to use the restroom with the brace on. Like impossible.
        So, if I wore it under a shirt and had to take it off every time I peed which is constant cuz the thing squeezes my organs including my poor bladder, I'd be taking my shirt off and my brace off off about 20 times a day.

        So I spare myself from the heat and having to strip repeatedly by wearing it on top of a t-shirt.
        People can stare if they want to. I don't really care.
        I'm actually considering painting the brace to look like wonder womans costume. It has the boobs and shape...lmao
        36 year old single mom of teens ages 14 & 15.
        Anterior/posterior spinal fusion on February 9th & 16th 2006 with Dr. Anthony Moreno who now has his own practice.
        Fused from T-3 to S-1 (sacrum)
        Curve pre-op = 70 degrees
        Curve post op = 20 degrees
        No pain anymore!!
        Google is your friend

        I am not a doctor and will never give medical advice. I will support and answer questions from personal experience only.

        Comment


        • #5
          OMG, you're killing me You made me smile and laugh and you do make sense, LOL. And you're one strong chick
          35 y/old female from Montreal, Canada
          Diagnosed with scoliosis(double major) at age 12, wore Boston brace 4 years at least 23 hours a day-curve progressed
          Surgery age 26 for 60 degree curve in Oct. 1997 by Dr.Max Aebi-fused T5 to L2
          Surgery age 28 for a hook removal in Feb. 1999 by Dr.Max Aebi-pain free for 5 years
          Surgery age 34 in Dec.2005 for broken rod replacement, bigger screws and crosslinks added and pseudarthrosis(non union) by Dr. Jean Ouellet

          Comment


          • #6
            Kat----you are wonder woman!!!! Ly...Just was thking back to wearing the milwaukee brace in my teens & I jumped a hurdle & cracked the girdle part of the brace...but made the hurdle...Ly

            Comment


            • #7
              Just for giggles last night, I crappily photoshopped my brace. Here's my brace the way I wear it and ps'd...lol

              Why yes, I am a dork, why do you ask?...lmao
              36 year old single mom of teens ages 14 & 15.
              Anterior/posterior spinal fusion on February 9th & 16th 2006 with Dr. Anthony Moreno who now has his own practice.
              Fused from T-3 to S-1 (sacrum)
              Curve pre-op = 70 degrees
              Curve post op = 20 degrees
              No pain anymore!!
              Google is your friend

              I am not a doctor and will never give medical advice. I will support and answer questions from personal experience only.

              Comment


              • #8
                Kat you are so funny! I've been in my brace that is similar to yours since January, but mine velcros in the front. Anyway yes people stare all the time. I get the feeling they look at me in pitty "like that poor girl she is crippled". Some people actually ask, which I am fine with, I'd rather educate the vast majority of idiots we have in this world, rather than let them continue to feel sorry or make fun of people without knowing what is wrong.

                I often joke when they ask that it's my bullet proof vest, just incase there is a drive by. I've had people ask if I broke my back. But the people who ask are very nice about it and many of them have actually had the surgery or know someone who did. So that's kind of cool to hear success stories from others.

                I was in my office the other day for a visit (haven't started back to work yet) and everyone said it's sexy cause I got the slim curves and boob molds going for me. They want to decorate it with tassels and lace and make this the new victoria's secret line. Hey what ever works!

                Anyway sweetness, I'm sorry you feel that way. Some people can just be downright rude. Just remember that nobody out there knows what you are going through better than you. And you are the only one who is in control of your health and getting better. So don't let the negative comments discourage you. You have done what you had to do so you can have a normal life free of pain one day. It's not up to others to judge us on how we go about it. Most people won't ever get why we have these drastic surgeries, cause they have never lived in our bodies and dealt with the issues we do every day, or the pain.

                Sometimes when people stare or ask stupid questions I just put them in their place by joking about my situation. Cause you know what, I am ok with the fact that I have to wear this lovely plastic device. It makes me different than every Joe Smoe out there, and I am happy to be different. You've got to be able to find humor in everything in life. Plus when you can joke about yourself like that it really makes those rude people look stupid even to themself.
                Shelly
                Anterior Spinal Fusion and titanium rod and screws inserted to correct 45 degree thoracolumbar curve from T12 - L4 on 1/4/06.

                Comment


                • #9
                  Mine velcros in the front too, I guess from the pic it doesn't look like it but it does.

                  They want to decorate it with tassels and lace and make this the new victoria's secret line.
                  This was another suggestion. Some friends wanted to do a paint job ala Madonna corset style like this;

                  http://www.allaboutmadonna.com/photo...ormal_0020.jpg

                  I have some weird friends.
                  36 year old single mom of teens ages 14 & 15.
                  Anterior/posterior spinal fusion on February 9th & 16th 2006 with Dr. Anthony Moreno who now has his own practice.
                  Fused from T-3 to S-1 (sacrum)
                  Curve pre-op = 70 degrees
                  Curve post op = 20 degrees
                  No pain anymore!!
                  Google is your friend

                  I am not a doctor and will never give medical advice. I will support and answer questions from personal experience only.

                  Comment


                  • #10
                    LOL Kat, I like both but the Madonna is my favorite.

                    Shelly, I know what you mean about finding humor in everything, boy did we in the hospital. I'm usually a sarcastic person, but lately have found that I lost some of my touch, LOL. I think the women who work at that hair salon are always in need of a good gossip. The next day when my mom went in for her weekly hair appointment, as I predicted they talked to her about me again, and how it was SUCH a pity that a beautiful girl like me had such trouble with her back, and they kept repeting that I was stiff, you know; nothing positive. Oh man did my mom let them have it, and told them that it's not the way to encourage a person, and if they have nothing nice to say to keep their thoughts to themselves, LOL. But anyway, like I said in a previous post, I usually don't let people bother me too much, but I know that I've had a rough year on many levels and I need time to heal physically, but even more emotionally, and that's OK. Gone are the days when I expect to be perfect and strong and if I'm not I am mad at myself. That was my new resolution this year and I'm sticking to it
                    35 y/old female from Montreal, Canada
                    Diagnosed with scoliosis(double major) at age 12, wore Boston brace 4 years at least 23 hours a day-curve progressed
                    Surgery age 26 for 60 degree curve in Oct. 1997 by Dr.Max Aebi-fused T5 to L2
                    Surgery age 28 for a hook removal in Feb. 1999 by Dr.Max Aebi-pain free for 5 years
                    Surgery age 34 in Dec.2005 for broken rod replacement, bigger screws and crosslinks added and pseudarthrosis(non union) by Dr. Jean Ouellet

                    Comment


                    • #11
                      Kat - I like the Madonna idea! I've got inspiration now.
                      Just found out yesterday I have to wear the brace for another month so I'll have to get creative.

                      Sweetness- Tell your Mom, "You Go Girl" good for her to put them in their place. It is funny how salon women tend to gossip so much. Well so people just don't get that comments like that hurt and not help. I've got a neighbor who is also a friend (I guess) who had the same surgery about 10 years ago. So before I had my surgery she told me alot about her experience and really made it sound like a cake walk. Well of course I researched more than what she said and it never sounded like a cake walk to me. So then when I finally had surgery and started living the reality of "hell this is freaking the hardest thing I've ever done", I feel like she wasn't supportive at all for me. She sort of acted like I'm a baby cause she was ok so quickly with hers. It just really pissed me off and hurt my feelings too. She's always pressuring me to hang out with her and the other neighbors to party on the weekends, well honestly I don't feel like doing that right now because I just don't feel that good. You would think someone who had the surgery would actually understand this, but she doesn't and she is constantly giving me a guilt trip about not being social during my recovery. It just goes to show there are a lot of inconsiderate people out there. All my other friends have been so understanding and helpful during this hard time for me, but the one person who I really thought would understand best how it is, hasn't even offered to lift one finger to help me, or even words of encouragement when I am down.

                      I know this is different from your situation with the salon ladies but I thought it might help you to hear it. So what have I done about her or this situation? Even though she is my neighbor and I can't escape her... I have limited my contact with her because I don't need negative people in my life right now. So try to surround yourself with people who are positive and build you up not tear you down. Hopefully your mom's comment put them in their place and they won't be so rude next time you are in there.

                      Good luck with your recovery and please know I'm always here to talk to or vent to if you want.
                      Shelly
                      Shelly
                      Anterior Spinal Fusion and titanium rod and screws inserted to correct 45 degree thoracolumbar curve from T12 - L4 on 1/4/06.

                      Comment


                      • #12
                        To Shelly-negative comments

                        Oh I can TOTALLY relate to your story about your "friend" and the lack of compassion. See, I have a person in my life like that, and I try my damndest to avoid her as well now since it sucks the life right out of me on every level just to HEAR her speak, and let me tell you it does the same to everybody I know including my husband who doesn't give a rat's behind what others think or say-USUALLY- but this person does the same thing at times for him. She's my sister, my only sibling I can't even begin to tell all the things she has done to me, and ever since I had my health issues with my surgeries, she feels "jealous" on some level b/c of some of the "attention" I get, if you can believe that. LOL. I just stay away from her the most I can and even if it is sad since she's my family, it's life and like you I don't need the negative energy.

                        Don't even bother with that person and sometimes when a person goes through the same thing as us, and doesn't have the same experience(like pain or outcome, for example); than that can be even harder to share our pain with them. Like I always repeat on this forum, we're all different, physically, mentally and emotionally, and that's ok. We all have different strenghts and weaknesses.

                        Good luck to you to and take it easy
                        35 y/old female from Montreal, Canada
                        Diagnosed with scoliosis(double major) at age 12, wore Boston brace 4 years at least 23 hours a day-curve progressed
                        Surgery age 26 for 60 degree curve in Oct. 1997 by Dr.Max Aebi-fused T5 to L2
                        Surgery age 28 for a hook removal in Feb. 1999 by Dr.Max Aebi-pain free for 5 years
                        Surgery age 34 in Dec.2005 for broken rod replacement, bigger screws and crosslinks added and pseudarthrosis(non union) by Dr. Jean Ouellet

                        Comment


                        • #13
                          To Shelley you are too funny and right on,when it come to our surrounding.

                          HI Shelly,
                          I'm Cic, new to the forum, I agree with you so and sweetness on this. It is so important to choose our surrounding carefully, and I do as well have members of my familly to which I do not discusse my condition with at all.
                          There is just no understanding there, and you can tell that you just can't talk to them about it. They don,t get it. and anything they have to say will not be good.
                          See I learned the hard way that it is better to project a good attitude then to always be neg. It was not always and still isn't easy to do. But , i force myself to do it. I lost (people I thought would always be in my life)friends due to being so negative. But I also realize tanks to my true friend, that friends are suppose to be there trew the good, and the bad. It was very hard at one time, and they slowly started to leave. But, in life one good friend can take the place of a thousand.
                          I have often visites like all of you, the hospital, and one time, on one of those visite(apponments I saw something that changed my attitude for ever.
                          I realized then that yeah I have a back probleme, yes I have to say ''no'' often to my kids for what ever activity, and yes I would love to be able to help my husband out more. But, I am not going to die from this. I am still walking. Can still danse some what on a good day. So this isn't so bad. I was a teen when I saw this child in the hospital. dying and yet had the greats smile and joy on its face. Since that day, yeh f---k life suck at time and the pain is unbeleivable, and good it is scary when I can't get up and the pain is too much, but it passes and everything is okay again. you know.
                          So that day I had told my sweet heart at that time. To never ever tell me again that he feels sorry for me, I told him if you want to feel sorry for someone think of that kid and is familly. It is a no ,no word for me, my mother use to always worry and be so upset and everything. I have to constantly remind her that this is nothing compared to so many others. I don't want anyone to feel sorry for this, especialy my kids. I don't want them to worry about me and they are pretty good, they understand well now how it can be at time and are very sympatatic and helpful and are just 8- 6. I don't want this to be seen as the end of the world for them, especialy if he or she will get it. they are aware of the possibility due to being so closely monitored. They know that ''there is always someone worse then you, you will get trew it. ''
                          Anyway sorry for the long e-mail. I just wanted to share that when you surround yourself with the people who think like you, instead of people who get down over the littless thing. It is our outlook, that makes all the difference. My friends tell me (and it touches me when they do,) that, I keep them focus on what matters.
                          Life for me since scoliosis,21 ys, as been very painful and very discouraging and emotionaly draning, finacialy stressful due to not working. But, I would never ever change a thing for it as made me who I am, and it as made me aware, and focus on stuff that matter. I am gratful for all that.

                          OH and by the way I have a brace too, but I don't look half as good as you do. I like the madonna one too.
                          You have a super attitdue Shelley and don't let anyone change that.
                          Thank for the laughs. Cic...Take care.
                          Last edited by CicfromOttawa; 05-23-2006, 09:30 PM.

                          Comment


                          • #14
                            KatBlack, I had to wear a brace like that also. Mine was uncomfortable, but after a while I got used to it. I always wore mine over my shirt. Because I could not imagine that hot plastic next to my skin. I always tried to wear white or light colored t-shirts under mine. That way it was cooler. Both times I had surgery I had to wear one. Good luck and keep the spirit.

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