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Thread: :(I feel like a animal.....:(

  1. #1
    Join Date
    Jun 2008
    Location
    Oregon
    Posts
    18

    Unhappy :(I feel like a animal.....:(

    I got diagnosed with scoliosis about 2 years ago. It really didnt get bad until this year. My parents took me to see a specialist when it started to look and feel worse. They told me that I needed surgery. I decided until surgery day (August 14th) I was NOT going to think about it, and just try to live my life until surgery. But every time I go somewhere with my parents they talk about it, and it drives me nuts. They show everyone my back. like I am a freak in the circus. I know my parents love me, but it really bothers me, and I dont know what to say to them to make them hear me. All I want is to have an amazing summer, like I had planned, and not have it ruined by this.

  2. #2
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,809
    I am so sorry to hear what you are going through.

    Have you tried telling your parents how you feel? I'm sure, as you say, they love you and do NOT mean any harm. My guess (as a parent) is that they are trying to deal with the situation as best they can and perhaps talking to others about it helps them.

    However, THAT BEING SAID, your feelings should come first and I am sure that if they KNEW how much it upset you, they would change their behavior.

    Please try to find a way to let them know how you feel.

    If you don't get through to them, perhaps there is another adult you could talk to who could speak to them.

    Best of luck, hon.
    mariaf305@yahoo.com
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

    https://www.facebook.com/groups/ScoliosisTethering/

    http://pediatricspinefoundation.org/

  3. #3
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,901
    I know exactly how you feel and it is very normal. My daughter, Savannah, got to a point a few weeks before her surgery where she just did NOT want to talk about it any more. Her father and I, of course, respected that. She had enough to deal with at that point. If she brought it up, we would talk about it but I never brought it up after that point.

    I agree with Mariaf that your parents are dealing with their own feelings about your surgery and talking about it almost certainly makes them feel better. I can guarantee you they have a boatload of feelings about your surgery. But your feelings are more important at this point. Much more important.

    Maybe you can show them Maria's and my posts on this thread and they might understand better that it is very normal for you not to want to talk about it and that you shouldn't have to talk about it if you don't want to do so.

    I'll be thinking of you.

    Best regards,
    sharon

  4. #4
    Join Date
    May 2008
    Location
    Central NJ
    Posts
    1,956
    I can understand, both from a patient perspective, and as a parent.

    When I was diagnosed at 14, I didn't have surgery, but had the Milwalkee brace for 3 years. I remember feeling that my mother took it harder than she did, and I hated to hear her talk about it. I remember her crying at the brace fitting, even though I didn't. Now, at 46, I'll be having surgery in a few months because I have really progressed. I want to have the best summer ever, and many parties. On Saturday, we had a pool party, and some of my mother's comments about what is 'best for people with bad backs', along with everyone else's conversation about the upcoming surgery, just had me burst into tears. I don't WANT to talk about this stuff, I want to have a good summer.

    As a parent, all 3 of my kids now have scoliosis, although none have had to have treatment yet. I try to be careful not to discuss with others in front of them because I remember how it made me feel like a medical freak. It's not easy as a parent to try an censor yourself sometimes.

    Like someone else said, why don't you explain your feelings to your parents, and tell them how you just want to have the best month and a half that you absolutely can.

    Good luck,
    __________________________________________
    Debbe - 50 yrs old

    Milwalkee Brace 1976 - 79
    Told by Dr. my curve would never progress

    Surgery 10/15/08 in NYC by Dr. Michael Neuwirth
    Pre-Surgury Thorasic: 66 degrees
    Pre-Surgery Lumbar: 66 degrees

    Post-Surgery Thorasic: 34 degrees
    Post-Surgery Lumbar: 22 degrees

  5. #5
    Join Date
    Nov 2007
    Location
    Houston, TX
    Posts
    1,757
    I think if you explain to your parents exactly the way you did here, they can't help but understand your view.

    Maria made a good point: They are probably scared to death, and talking to people helps them work through that fear. My guess is they aren't even aware of how it's making YOU feel.

    Perhaps you could use your obvious maturity and suggest they choose 1 or 2 close friends to work through their feelings (and never in your proximity), and let you deal with your feelings right now by ignoring it while you can - and that's what you'd like to do. It will be here soon enough, and I'm sure if they knew the stress is was putting on you before surgery they'd honor your wishes.

    On the bright side, honey (yes, yes ... I'm a freakin' ray of sunshine tonight ;-), this isn't your last summer. This IS, however, your last summer of being crooked and dealing with back pain no one, especially a teenager, should have to endure.

    I know it's hard at your age to see things in the longer term like us old farts, but just think ... you are going to be practically *healed* by next summer! Your scar will be virtually unnoticeable (I'm almost 5 months from surgery and mine had faded thin and white - you actually have to look for it), and you're going to feel SO much better.

    Without sounding tooooooo Pollyanna, and I know this doesn't solve the way you feel about having your private life public and being objectified, try to see Aug. 14th as a start to a better phase of your life. Maybe that will also make things easier on you.

    (and, yes ... I still think you need to talk to your parents ... just an idea for taking charge of your own feelings ;-)

    You know, there are several of us on here who list our email addresses. If you find out fear IS what is causing your parents to constantly discuss your scoli with others, they are more than welcome to contact me if they'd want to do that (and I'm sure others would be amenable too - without ratting you out for posting your dilemma, of course).

    Hang in there and best of luck to you.

    Regards,
    Pam
    Fusion is NOT the end of the world.
    AIDS Walk Houston 2008 5K @ 33 days post op!


    41, dx'd JIS & Boston braced @ 10
    Pre-op 53, Post-op < 20
    Fused 2/5/08, T4-L1 ... Darrell S. Hanson, Houston


    VIEW MY X-RAYS
    EMAIL ME

  6. #6
    Join Date
    Aug 2007
    Location
    Auckland, New Zealand
    Posts
    185
    I didn't like people knowing until when I was in my mid-20's, and then I would tell people. I totally get the problem, it really sux to be different. Even worse, to be made into a sideshow. Although recently I have been more open about my scoliosis, I get really mad when my sister wanted to show my x rays to her friends, who I don't know. It's just about respect, because you really want to be able to choose who you tell. I get that your parents are worried and going through stuff too, but they should respect your wishes. Maybe a compromise... "mom, dad, don't talk about my back with me around". Also, if you really feel brave and they want a show and tell, you could take pics of your back and give them to them, so you don't have to go through it in person!
    1994 curve at age 13, 70 degrees, untreated
    2000 Anterior fusion with instrumentation T9-L2, corrected to 36 degrees, 14 degree angle between fused and un-fused thoracic spine.
    2007 26 degrees junctional scoliosis
    Revision surgery, 6th December 2007 T4 to L3, Posterior approach.
    msandham.blogspot.com

  7. #7
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,809
    Quote Originally Posted by txmarinemom
    On the bright side, honey (yes, yes ... I'm a freakin' ray of sunshine tonight ;-), this isn't your last summer. This IS, however, your last summer of being crooked and dealing with back pain no one, especially a teenager, should have to endure.

    I know it's hard at your age to see things in the longer term like us old farts, but just think ... you are going to be practically *healed* by next summer! Your scar will be virtually unnoticeable (I'm almost 5 months from surgery and mine had faded thin and white - you actually have to look for it), and you're going to feel SO much better.

    Without sounding tooooooo Pollyanna, and I know this doesn't solve the way you feel about having your private life public and being objectified, try to see Aug. 14th as a start to a better phase of your life. Maybe that will also make things easier on you.

    (and, yes ... I still think you need to talk to your parents ... just an idea for taking charge of your own feelings ;-)

    You know, there are several of us on here who list our email addresses. If you find out fear IS what is causing your parents to constantly discuss your scoli with others, they are more than welcome to contact me if they'd want to do that (and I'm sure others would be amenable too - without ratting you out for posting your dilemma, of course).
    What the hell is in the air over there tonight, Pam - LOL!! Just a ray of sunshine indeed :-)

    Seriously, that was a great post from the perspective of the patient/child. And as you said, there are plenty of us who'd be willing to email with any parent regarding the fears and anxieties we go through.
    mariaf305@yahoo.com
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

    https://www.facebook.com/groups/ScoliosisTethering/

    http://pediatricspinefoundation.org/

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