Comments on: Guest Post: Sex and Scoliosis http://disabledfeminists.com/2009/11/13/guest-post-sex-and-scoliosis/ FWD (feminists with disabilities) for a way forward Thu, 30 Dec 2010 17:29:21 +0000 hourly 1 By: VictoriaRae http://disabledfeminists.com/2009/11/13/guest-post-sex-and-scoliosis/#comment-16095 VictoriaRae Tue, 23 Nov 2010 22:22:44 +0000 http://disabledfeminists.com/?p=1223#comment-16095 My names Victoria, I'm sixteen and I have scoliosis. My turn was nearly eight degrees and I had a brace for at least five years. I had to wear it everyday, but I was ridiculed so much in school there is not one day I didn't think of suicide. It hurt horribly. I could not stand up for more than twenty minutes and I had no friends. I was called cruel names like Quasimodo and Camel back. These words pierced me so, I refused to wear my brace and my back progressively got worse. It finally got to the point where I needed to have surgery. I cried my eyes out. There was a chance that I wouldn't make it and it was the hardest decision my mother has ever had to make. I got the surgery May 14, 2007. It turns out that I got a new type of MRSA that clung on to the titanium rods in my back and they had never seen something like it before. For those of you that don't know, Methicillin-resistant Staphylococcus aureus (MRSA) is a bacterium responsible for several difficult-to-treat infections in humans. It may also be called multidrug-resistant Staphylococcus aureus or oxacillin-resistant Staphylococcus aureus (ORSA). MRSA is, by definition, any strain of Staphylococcus aureus bacteria that has developed resistance to beta-lactam antibiotics which include the penicillins (methicillin, dicloxacillin, nafcillin, oxacillin, etc.) and the cephalosporins. MRSA is especially troublesome in hospitals where patients with open wounds, invasive devices and weakened immune systems are at greater risk of infection than the general public. But they had to try me on a new medication and it rotted the enamel in my teeth. I stayed in the hospital for nearly two months in a drug induced coma. I was in so much pain. I woke up hearing the doctor tell my mother to make funeral arrangements for me, telling her that I only had a 20-30% chance of living. Now, nearly four years later, I am STILL in as much pain as I was. I have back spasms almost everyday. But, it's something I have to live with, I have arthritis in my back, and I can only stand for 45 minutes at a time. I can not sleep on my back and I'm only sixteen. There's still day's where I think of dying. putting myself out of all this pain. Doctors can't help me any further. I'm sorry this post was so long, I just felt the need to share my story with these bloggers. My names Victoria, I’m sixteen and I have scoliosis. My turn was nearly eight degrees and I had a brace for at least five years. I had to wear it everyday, but I was ridiculed so much in school there is not one day I didn’t think of suicide. It hurt horribly. I could not stand up for more than twenty minutes and I had no friends. I was called cruel names like Quasimodo and Camel back. These words pierced me so, I refused to wear my brace and my back progressively got worse. It finally got to the point where I needed to have surgery. I cried my eyes out. There was a chance that I wouldn’t make it and it was the hardest decision my mother has ever had to make. I got the surgery May 14, 2007. It turns out that I got a new type of MRSA that clung on to the titanium rods in my back and they had never seen something like it before. For those of you that don’t know, Methicillin-resistant Staphylococcus aureus (MRSA) is a bacterium responsible for several difficult-to-treat infections in humans. It may also be called multidrug-resistant Staphylococcus aureus or oxacillin-resistant Staphylococcus aureus (ORSA).
MRSA is, by definition, any strain of Staphylococcus aureus bacteria that has developed resistance to beta-lactam antibiotics which include the penicillins (methicillin, dicloxacillin, nafcillin, oxacillin, etc.) and the cephalosporins.
MRSA is especially troublesome in hospitals where patients with open wounds, invasive devices and weakened immune systems are at greater risk of infection than the general public. But they had to try me on a new medication and it rotted the enamel in my teeth. I stayed in the hospital for nearly two months in a drug induced coma. I was in so much pain. I woke up hearing the doctor tell my mother to make funeral arrangements for me, telling her that I only had a 20-30% chance of living. Now, nearly four years later, I am STILL in as much pain as I was. I have back spasms almost everyday. But, it’s something I have to live with, I have arthritis in my back, and I can only stand for 45 minutes at a time. I can not sleep on my back and I’m only sixteen. There’s still day’s where I think of dying. putting myself out of all this pain. Doctors can’t help me any further. I’m sorry this post was so long, I just felt the need to share my story with these bloggers.

]]> By: Annitspurple http://disabledfeminists.com/2009/11/13/guest-post-sex-and-scoliosis/#comment-14267 Annitspurple Wed, 15 Sep 2010 22:09:44 +0000 http://disabledfeminists.com/?p=1223#comment-14267 Hey K, your comment that scoliosis is worse than being obese b/c "At least, you can exercise and lose weight, but this, you can do nothing about it" is incredibly rude and insensitive. I have a diagnosed endocrine disorder, and no amount of exercise will EVER change my body. Finding the body/fat acceptance movement has been a lifesaver, and learning to love/accept myself as I am has for me been tremendously empowering. Comments like yours a) plays one stigmatized condition against another, which misses the point, and b) upholds a set of stereotypes/faulty assumptions about fat bodies that are actually not true. Dieting only works long-term for about 5% of people, so telling me that I can just exercise and lose weight, esp with my particular physiology, is somewhat akin to if I were to tell you to just suck it up and stand up straight. Please think more carefully about the assumptions you make about other people's bodies and their experiences in them. Hey K, your comment that scoliosis is worse than being obese b/c “At least, you can exercise and lose weight, but this, you can do nothing about it” is incredibly rude and insensitive. I have a diagnosed endocrine disorder, and no amount of exercise will EVER change my body. Finding the body/fat acceptance movement has been a lifesaver, and learning to love/accept myself as I am has for me been tremendously empowering. Comments like yours a) plays one stigmatized condition against another, which misses the point, and b) upholds a set of stereotypes/faulty assumptions about fat bodies that are actually not true. Dieting only works long-term for about 5% of people, so telling me that I can just exercise and lose weight, esp with my particular physiology, is somewhat akin to if I were to tell you to just suck it up and stand up straight. Please think more carefully about the assumptions you make about other people’s bodies and their experiences in them.

]]> By: Margot H. http://disabledfeminists.com/2009/11/13/guest-post-sex-and-scoliosis/#comment-14240 Margot H. Mon, 13 Sep 2010 12:40:22 +0000 http://disabledfeminists.com/?p=1223#comment-14240 This post and all the stories following really caused a spur of emotions inside of me. I'm recently 18, my scoliosis was more or less discovered when I was 13, and I had surgery when I was sixteen. In 2005, when my curvature was first noticed, the upper one was only about 8 degrees and the lumbar around 13 degrees. Three years later, I found myself looking at an x-ray up in the doctor's office, feeling like my life was over as I stared, and stared, at a black and white image showing my once almost unnoticeable scoliosis as a respective 59 and 73 degrees respectively. At the time, I hadn't ever heard of Ehlers-Danlos Syndrome (which, by now, it has been confirmed I have). The doctors had told me it should have stopped when I had hit my full height. What was problematic is that I hadn't been growing vertically at all. I was curving at the same rate of growth. Which was really, really fast. I never hit my 'true height'. I had been about 5'10" at one point; the day of the surgery I was measured to be 5'8". People should not be worried about have scoliosis surgery that much. It hurts, yes, but you get over it. I barely remember it because of the crazy amount of painkillers. I think the worse part was being told to sit up the next day. And, the scar? I'd much rather it than a crooked spine-- mind you, my curves aren't gone 100% and my spine isn't even in the middle of the back of my neck. I'm proud of my scar. I wear low-back tops to show it off. People aren't grossed out by it, they admire it, as well as the 'courage' it takes to exhibit it so freely. Once again, I thank you for posting this. Below is my own piece of scoliosis- the progression x-rays from 2005 through 2009. M. http://i174.photobucket.com/albums/w94/SinLark/SpinalProgression.png This post and all the stories following really caused a spur of emotions inside of me. I’m recently 18, my scoliosis was more or less discovered when I was 13, and I had surgery when I was sixteen.

In 2005, when my curvature was first noticed, the upper one was only about 8 degrees and the lumbar around 13 degrees. Three years later, I found myself looking at an x-ray up in the doctor’s office, feeling like my life was over as I stared, and stared, at a black and white image showing my once almost unnoticeable scoliosis as a respective 59 and 73 degrees respectively. At the time, I hadn’t ever heard of Ehlers-Danlos Syndrome (which, by now, it has been confirmed I have). The doctors had told me it should have stopped when I had hit my full height.

What was problematic is that I hadn’t been growing vertically at all. I was curving at the same rate of growth. Which was really, really fast. I never hit my ‘true height’. I had been about 5’10″ at one point; the day of the surgery I was measured to be 5’8″.

People should not be worried about have scoliosis surgery that much. It hurts, yes, but you get over it. I barely remember it because of the crazy amount of painkillers. I think the worse part was being told to sit up the next day.

And, the scar? I’d much rather it than a crooked spine– mind you, my curves aren’t gone 100% and my spine isn’t even in the middle of the back of my neck. I’m proud of my scar. I wear low-back tops to show it off. People aren’t grossed out by it, they admire it, as well as the ‘courage’ it takes to exhibit it so freely.

Once again, I thank you for posting this. Below is my own piece of scoliosis- the progression x-rays from 2005 through 2009.

M.
http://i174.photobucket.com/albums/w94/SinLark/SpinalProgression.png

]]> By: M http://disabledfeminists.com/2009/11/13/guest-post-sex-and-scoliosis/#comment-12970 M Tue, 13 Jul 2010 03:13:34 +0000 http://disabledfeminists.com/?p=1223#comment-12970 Thank you so much for this post (and to the commenters). I'm 26 and I've struggled with scoliosis since I was 15. I have an S curve (37 lumbar, 30 upper last I had checked). I struggle with discomfort (physical and emotional) over this condition every day. Scoliosis is always on the back of my mind. I'm extremely self conscious of the bulge on my left waist and my overly defined right waist. When I'm at the beach or the pool, all I can do is look enviously at all the other women with straight spines. It's sick, really. Over the past year or so, callanetics, yoga and my chiropractor have brought me some relief. My right side is no longer as compressed as it once was, my hips have leveled out a bit and my shoulders aren't as uneven. But everytime I look in the mirror, all I can see is my deformity. Thanks for posting the artsy pictures. I've seen a few other pictures of women with scoliosis that I find very beautiful as well. I suppose it's just hard to see that beauty in my own body after dwelling on the negative for so long. It's very nice to read and see that I'm not alone. Thank you so much for this post (and to the commenters). I’m 26 and I’ve struggled with scoliosis since I was 15. I have an S curve (37 lumbar, 30 upper last I had checked). I struggle with discomfort (physical and emotional) over this condition every day. Scoliosis is always on the back of my mind. I’m extremely self conscious of the bulge on my left waist and my overly defined right waist. When I’m at the beach or the pool, all I can do is look enviously at all the other women with straight spines. It’s sick, really.
Over the past year or so, callanetics, yoga and my chiropractor have brought me some relief. My right side is no longer as compressed as it once was, my hips have leveled out a bit and my shoulders aren’t as uneven. But everytime I look in the mirror, all I can see is my deformity. Thanks for posting the artsy pictures. I’ve seen a few other pictures of women with scoliosis that I find very beautiful as well. I suppose it’s just hard to see that beauty in my own body after dwelling on the negative for so long. It’s very nice to read and see that I’m not alone.

]]> By: Donna http://disabledfeminists.com/2009/11/13/guest-post-sex-and-scoliosis/#comment-12737 Donna Wed, 30 Jun 2010 02:14:26 +0000 http://disabledfeminists.com/?p=1223#comment-12737 Hi everyone! I am now 56 years old and have had scolisis since I was 14. At that time my symptoms of one "raised" hip, uneven shoulders, and obvious ribcage on the right side of my back had my mom take me off to the doctor's. He found that the curve -which eventually went to 75 degrees, had to be taken care of with a spinal fusion and harrington rod. I guess I was a bit of a pioneer for that kind of surgery--my rods and all have been "in there" for 42 years now! As some encouragement to those young people facing this challenge, I have to say that the operation, 3 months is a body cast, and then 3 months in a brace all worked out well for me. My curve was reduced to just over 20 degrees. I went on to become a school teacher, married and successfully went through 2 pregnancies. I have just retired from teaching.,I had no pain during all that time. Now, as menopause is raging, I can feel twinges in my back and can only assume that changes in discs, etc. are going to be causing me some problems. However, I am so thankful for the wonderful years I've been given, that I'm planning on looking this in the face and doing whatever I can to keep myself fit and the pain under control, as much as it's in my power to do. Thanks for the forum and comments--it's nice to know we're not alone! Hope I've been of encouragement to someone! Donna Hi everyone! I am now 56 years old and have had scolisis since I was 14. At that time my symptoms of one “raised” hip, uneven shoulders, and obvious ribcage on the right side of my back had my mom take me off to the doctor’s. He found that the curve -which eventually went to 75 degrees, had to be taken care of with a spinal fusion and harrington rod. I guess I was a bit of a pioneer for that kind of surgery–my rods and all have been “in there” for 42 years now! As some encouragement to those young people facing this challenge, I have to say that the operation, 3 months is a body cast, and then 3 months in a brace all worked out well for me. My curve was reduced to just over 20 degrees. I went on to become a school teacher, married and successfully went through 2 pregnancies. I have just retired from teaching.,I had no pain during all that time. Now, as menopause is raging, I can feel twinges in my back and can only assume that changes in discs, etc. are going to be causing me some problems. However, I am so thankful for the wonderful years I’ve been given, that I’m planning on looking this in the face and doing whatever I can to keep myself fit and the pain under control, as much as it’s in my power to do.
Thanks for the forum and comments–it’s nice to know we’re not alone! Hope I’ve been of encouragement to someone! Donna

]]> By: K http://disabledfeminists.com/2009/11/13/guest-post-sex-and-scoliosis/#comment-12357 K Tue, 15 Jun 2010 02:55:35 +0000 http://disabledfeminists.com/?p=1223#comment-12357 Really glad to have a post like this. People without this condition just wouldn't understand how it feels to be like this. I have it since I was 10. It was a nightmare. At first check, the doctor asked me to have the surgery. But my mum was reluctant, she was afraid of complications. And I am glad she didn't let me have that surgery. I have been living it with 8 years now. It doesn't really bothers me. Sometimes I will think of it, get depressed a little while, but then decide to get on with life. School was definitely hard. High School in my country was still fine, we wore uniforms, mine was loose fit so it wasn't that obvious, college was bad. I transferred twice then decided I couldn't take it anymore. People were staring at you like you are a weirdo with some kind of disease or illness. And they start avoiding you. That feeling is one of the worst. Some may think that being fat or obese is the worst feeling, but I'll tell you, having this condition is the worst. At least, you can exercise and lose weight, but this, you can do nothing about it. I have learnt to accept it now. I can't do anything about it, so I'll just let it go. I am living like no other people. But I never thought of getting into relationships, imagine, what your partner will do or say, when he/she found out that you have this condition. gosh. Don't dare to think of getting pregnant of having kids. Sex, would be the last thing on my mind. The future? Its always full of hope. Don't give up on yourself. I have already decide to spend all my life alone. I don't really care, I just need to live my life to the fullest for myself. All the best to the others who have this condition. May you all get well and better. Don't give up on yourself, and believe that you are normal and fine. You are just as great as others. You are great. Really glad to have a post like this. People without this condition just wouldn’t understand how it feels to be like this. I have it since I was 10. It was a nightmare. At first check, the doctor asked me to have the surgery. But my mum was reluctant, she was afraid of complications. And I am glad she didn’t let me have that surgery. I have been living it with 8 years now. It doesn’t really bothers me. Sometimes I will think of it, get depressed a little while, but then decide to get on with life. School was definitely hard. High School in my country was still fine, we wore uniforms, mine was loose fit so it wasn’t that obvious, college was bad. I transferred twice then decided I couldn’t take it anymore. People were staring at you like you are a weirdo with some kind of disease or illness. And they start avoiding you. That feeling is one of the worst. Some may think that being fat or obese is the worst feeling, but I’ll tell you, having this condition is the worst. At least, you can exercise and lose weight, but this, you can do nothing about it. I have learnt to accept it now. I can’t do anything about it, so I’ll just let it go. I am living like no other people. But I never thought of getting into relationships, imagine, what your partner will do or say, when he/she found out that you have this condition. gosh. Don’t dare to think of getting pregnant of having kids. Sex, would be the last thing on my mind. The future? Its always full of hope. Don’t give up on yourself. I have already decide to spend all my life alone. I don’t really care, I just need to live my life to the fullest for myself. All the best to the others who have this condition. May you all get well and better. Don’t give up on yourself, and believe that you are normal and fine. You are just as great as others. You are great.

]]> By: Lisa http://disabledfeminists.com/2009/11/13/guest-post-sex-and-scoliosis/#comment-12062 Lisa Thu, 03 Jun 2010 13:10:57 +0000 http://disabledfeminists.com/?p=1223#comment-12062 reading this post brought me to tears. I have had scoliosis since I was 13 (I'm 26 now - wow, I just realised that's half of my life) and I get so upset about it as no one I know could relate. I sometimes stand in the mirror and just stare at my back and hips. I try about 50 different stances to try to make it less obvious but none work. I've been told by physios, chiros and orthopedic docs that I'm the worst case they've seen. How badly that guts me.... I was lucky my parents cared about me so much. They 'forced' me to wear a Boston brace knowing how much it would help me. They even threw me a back brace party to introduce it to my friends to help them understand. I had a big strong group of friends at my all girls school so there was zero bullying. I guess what upsets me most is that I know this is permanent and will only get worse. I just don't know how I'm going to cope with that when I get older. Pregnancy scares the crap out of me. I've heard horror stories.... Sorry this is so long, but I too have had no one to discuss this with that can relate...... reading this post brought me to tears. I have had scoliosis since I was 13 (I’m 26 now – wow, I just realised that’s half of my life) and I get so upset about it as no one I know could relate. I sometimes stand in the mirror and just stare at my back and hips. I try about 50 different stances to try to make it less obvious but none work. I’ve been told by physios, chiros and orthopedic docs that I’m the worst case they’ve seen. How badly that guts me….

I was lucky my parents cared about me so much. They ‘forced’ me to wear a Boston brace knowing how much it would help me. They even threw me a back brace party to introduce it to my friends to help them understand. I had a big strong group of friends at my all girls school so there was zero bullying.

I guess what upsets me most is that I know this is permanent and will only get worse. I just don’t know how I’m going to cope with that when I get older. Pregnancy scares the crap out of me. I’ve heard horror stories….

Sorry this is so long, but I too have had no one to discuss this with that can relate……

]]> By: Kimbo http://disabledfeminists.com/2009/11/13/guest-post-sex-and-scoliosis/#comment-12023 Kimbo Wed, 02 Jun 2010 01:15:51 +0000 http://disabledfeminists.com/?p=1223#comment-12023 I'm so happy to have found this~ My scoliosis is not very pronounced, but because of where it is my waist is crooked, which has always made me feel insecure about my body. Reading this helped me feel like I'm not the only one with these problems... something I really needed right now. Thank you so much :) I’m so happy to have found this~

My scoliosis is not very pronounced, but because of where it is my waist is crooked, which has always made me feel insecure about my body. Reading this helped me feel like I’m not the only one with these problems… something I really needed right now.

Thank you so much :)

]]> By: Natalaze http://disabledfeminists.com/2009/11/13/guest-post-sex-and-scoliosis/#comment-10484 Natalaze Wed, 21 Apr 2010 10:21:03 +0000 http://disabledfeminists.com/?p=1223#comment-10484 Last August I had spinal fusion surgery, now 14 of my vertebra are fused together. I'm 16, a junior in high school, and can't attend full time. I go to intense physical therapy twice a week. I wore the brace for over a year before the surgery. My brace doctor promised me that it would stop the curve. It never did. It had a hole cut out on one side for my ribs, which made an off-putting lump on my side. I was to wear it 20 hours a day. My grades this year have tanked since I keep missing school. And I'm supposed to be healed by now, but somethings still wrong. Last August I had spinal fusion surgery, now 14 of my vertebra are fused together. I’m 16, a junior in high school, and can’t attend full time. I go to intense physical therapy twice a week.

I wore the brace for over a year before the surgery. My brace doctor promised me that it would stop the curve. It never did. It had a hole cut out on one side for my ribs, which made an off-putting lump on my side. I was to wear it 20 hours a day.

My grades this year have tanked since I keep missing school. And I’m supposed to be healed by now, but somethings still wrong.

]]> By: Christine http://disabledfeminists.com/2009/11/13/guest-post-sex-and-scoliosis/#comment-9880 Christine Fri, 02 Apr 2010 03:17:41 +0000 http://disabledfeminists.com/?p=1223#comment-9880 So many posts. I am 47 and I have had a 37 degree curvature since I was a young girl. My sister, 5 years younger, had spinal surgery at 14 and is still having problems due to refusing to wear her post-surgical brace after horrendous taunts at school. Very sad. I am again facing another x-ray soon to keep an eye on things. My story is a mix of all of the above posts. I grew up in an isolated region, very insular and hid my ugly body under large clothes and very long hair. High School was awful and was so unhappy as I really had no access to learn about the condition. My first evaluation was when my sister's curvature started its assault on her little body, then I spoke up. But too late for bracing I was told, along with I was to just deal with it and my doctor even said it was more noticeable as I was quite lean, so maybe put on some weight! Hideous approach. So my life has been hard, lots of self loathing and I am very self conscious, and hate wearing clothes. Honestly it takes me ages to get ready as I hate what I see in the mirror and hate how the clothes fight with my body. I have a wonderful 20 year old son and manage to have great friends and career. But would have happily curled up in a hole and died. My right shoulder blade has a life of its own, I cannot sit still stand still lie still for long without going crazy. You all know this anyway. It is so nice to finally get in the mood to talk online. I don't talk about it to hardly anyone. My colleagues at work don't say and I don't say, only to a couple who I have caught looking at me in that way. One friend did say recently, when I was leaning over doing something, 'oh my god, what is wrong with your back!?' and it still freaks me out and puts me in a depressed state for days. My partner is gorgeous and fully understanding, I am happy he loves me as I am. But I am in the throes of more pain lately and concerned it may be getting worse. That's all now, my back hurts from sitting here too long haha! So many posts. I am 47 and I have had a 37 degree curvature since I was a young girl. My sister, 5 years younger, had spinal surgery at 14 and is still having problems due to refusing to wear her post-surgical brace after horrendous taunts at school. Very sad. I am again facing another x-ray soon to keep an eye on things. My story is a mix of all of the above posts. I grew up in an isolated region, very insular and hid my ugly body under large clothes and very long hair. High School was awful and was so unhappy as I really had no access to learn about the condition. My first evaluation was when my sister’s curvature started its assault on her little body, then I spoke up. But too late for bracing I was told, along with I was to just deal with it and my doctor even said it was more noticeable as I was quite lean, so maybe put on some weight! Hideous approach. So my life has been hard, lots of self loathing and I am very self conscious, and hate wearing clothes. Honestly it takes me ages to get ready as I hate what I see in the mirror and hate how the clothes fight with my body. I have a wonderful 20 year old son and manage to have great friends and career. But would have happily curled up in a hole and died. My right shoulder blade has a life of its own, I cannot sit still stand still lie still for long without going crazy. You all know this anyway. It is so nice to finally get in the mood to talk online. I don’t talk about it to hardly anyone. My colleagues at work don’t say and I don’t say, only to a couple who I have caught looking at me in that way. One friend did say recently, when I was leaning over doing something, ‘oh my god, what is wrong with your back!?’ and it still freaks me out and puts me in a depressed state for days. My partner is gorgeous and fully understanding, I am happy he loves me as I am. But I am in the throes of more pain lately and concerned it may be getting worse. That’s all now, my back hurts from sitting here too long haha!

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