New member

[dailystrength]

hear ya

Dear so-shy,
Thanks for sharing your thoughts and feelings. On a particularly painful day (watering plants using a large watering can is not the best thing to do!), it's helpful to know I'm not the only one struggling with discouragement, though I'm sorry for what you're going through. You have definitely found the right place to vent. Welcome, and high regards to you. We all are fighting a huge physical battle which can feel insurmountable at times. But at other times, we are productive, needed, appreciated, loved, and beneficial to others. Just wanted to say "thanks". It is not all-defeating; it just feels that way on some days.

[so_shy]

Thank you jrnyc & braceyourself for the private messages with the encouraging words, prayers, etc.

[gail govan]

not your fault

Thank you jrnyc & braceyourself for the private messages with the encouraging words, prayers, etc.

Hi so_shy.
I know about self-loathing too. It is a real terrible feeling. And you cannot help it. And besides, you cannot help having the body you have either. You have as much right to be here on this earth and in your town as the next guy. Recently I was in a restaurant with my husband and coming towards us was a lady who must have a really strong set of scoliosis curves and was walking with such difficulty and I thought, "What beautiful courage." However you feel, when you go out and face that bunch of people where you live, you are living with more courage than any of them can possibly know.
Somehow in connection with your sadness I have thought of a book that I have heard about (I read another one by the same author) titled The Wisdom of Accepted Tenderness by Brennan Manning. Maybe Brendan Manning? Maybe your library can get it for you. I hope that in your quest for clothes that you can also find a peace within you that can conquer this great sadness. Gail

[hikerchick]

Hi So_shy,

I mostly lurk on here, but had to reply to your post. I have struggled with self-esteem my entire life (41 now) and am really making a solid effort now to improve it. You are so worth it. You have just as much right to be happy and feel good about yourself as everyone else. Read books on positive self-talk, working on self-esteem. Maybe do some volunteer work to focus on other people. It doesn't matter a whit what other people think about you, only what you think about yourself so work on improving that relationship with yourself. These are some things that have been beneficial for me. I will keep you in my thoughts!

Shelley

[so_shy]

Hi So_shy,

I mostly lurk on here, but had to reply to your post. I have struggled with self-esteem my entire life (41 now) and am really making a solid effort now to improve it. You are so worth it. You have just as much right to be happy and feel good about yourself as everyone else. Read books on positive self-talk, working on self-esteem. Maybe do some volunteer work to focus on other people. It doesn't matter a whit what other people think about you, only what you think about yourself so work on improving that relationship with yourself. These are some things that have been beneficial for me. I will keep you in my thoughts!

Shelley

We're about the same age.

Sorry it took so long to reply. I haven't visited the board in a while. I have a tendency to go into a kind of hiding when I get really down. I just avoid everything.

Thank you for those kind thoughts. I know it's not supposed to matter what other people think. But as I wrote in another thread, all it takes is for me to put on a shirt, look in the mirror, and I just sink. I mean. I find myself so repulsive when I see how I look in clothes, I almost want to throw up. And I hate myself. It's like I'm looking at someone else in the mirror. I say to myself, that's not me! That can't be me! What is the damn hump! I wish I could just slice it off. Bang it down or flatten it with some instrument. I mean, I sometimes wish there were a procedure to remove my shoulder blade. Or some device to hold in my shoulder blade so it would stop jutting out when I motion with my arm (as you can see in this picture:

http://i1188.photobucket.com/albums/...em/zzz1bbc.jpg

[so_shy]

Hi so_shy.
I know about self-loathing too. It is a real terrible feeling. And you cannot help it. And besides, you cannot help having the body you have either. You have as much right to be here on this earth and in your town as the next guy. Recently I was in a restaurant with my husband and coming towards us was a lady who must have a really strong set of scoliosis curves and was walking with such difficulty and I thought, "What beautiful courage." However you feel, when you go out and face that bunch of people where you live, you are living with more courage than any of them can possibly know.
Somehow in connection with your sadness I have thought of a book that I have heard about (I read another one by the same author) titled The Wisdom of Accepted Tenderness by Brennan Manning. Maybe Brendan Manning? Maybe your library can get it for you. I hope that in your quest for clothes that you can also find a peace within you that can conquer this great sadness. Gail

Thanks Gail.

Unfortunately, I still haven't found peace. I'm still fighting myself.

In the beginning, all I wanted to do was get rid of my scoliosos.

In recent years, I settled on just wishing I could find clothes to wear. But that has been a struggle (one I addressed in another thread on this message board and which I'm still having trouble despite some really good suggestions and input from other members. I'm hoping this spring to get back to finding solutions ... finding basic short-sleeve shirts that somehow I can fit into.)

[jrnyc]

hi so shy
just a suggestion...
surgery has come a long long way from the "old days"
maybe you won't want surgery, but it might be a good idea to visit
a good scoli surgeon, one RECOMMEMDED by someone on forum who
is familiar with the surgeon...a doctor who sees scoli patients all day
long, and who will have nothing but positive suggestions for you...
maybe i missed it, but i didn't see what state/city you live in...??
most major cities have great scoli doctors....and even some
smaller towns...sorry, my native New Yorker prejudice showing...have good scoli
docs as well....
why continue to suffer when there might be a solution...?

i retired as a social worker...but i would also suggest a therapist, just
someone to talk to, to open up to, someone who doesn't judge, a good listener...

just ideas to consider.....

jess

[rohrer01]

Hello, Shy.

I don't believe that I have posted on any of your threads as of yet. You mention that you have kyphosis. Are both of those pictures of you? I'm just asking because, while you have kyphosis, I have hypokyphosis in which there is no rounding of the upper back at all (well only 6* in my case when normal is 20*-40*, I believe). I have the same shoulder blade problem even though we are opposites. The reason for my problem is a very high and tight thoracic curve that creates quite a rib hump under my shoulder blade. I'm sure I don't need to say more as you can imagine what that does to the shoulder blade. I, too, am "in the middle" so to speak. Not quite bad enough for surgery, but bad enough to be self conscious. I'm 43 and my scoliosis has started progressing over the last few years. I've developed a new hump that sticks out of the opposite side of my shoulder blade hump. This rib hump isn't in the back, but on the side.

I've discovered a way that really hides it. Granted, I am a woman and have more clothing choices, but there are men's clothes that are similarly designed. First, I stay away from skin tight shirts. The shirts that fit the best are the well taylored button-up shirts with a larger collar (I'm not talking '70's large, but within reason). You can get taylored men's shirts in department stores that sell suits. Not all men like a straight cut. My husband has some very nice name brand taylored shirts that I found at Goodwill. He doesn't have scoliosis, but this is how I know they make them. Anyway, for my shirts, I wear a tank top underneath and leave the top couple of buttons undone. I have also seen this look on men and it doesn't look femmy at all. I think this style works MUCH better than the baggy look, as baggy clothes look like you are trying to hide something. The look I'm describing accentuates the neck and the waistline. I don't tuck my shirts in and they are rounded in the back. With men's shirts I think they make them so that you can either tuck them in or leave them untucked. I would suggest leaving it untucked IF the shirt isn't too long and the waist is taylored in enough. I hope this helps, as I do remember your other thread about clothing. That's why I'm mentioning it here.

On the more serious side, have you seen a scoliosis specialist recently? You really need to find out what is going on with your back. Degrees of curves, types of curves, rotation, disc health, etc. Find out if you are a surgical candidate.
I hope I have been somewhat helpful.

Sincerely,
Rohrer01

[so_shy]

Hello, Shy.

I don't believe that I have posted on any of your threads as of yet. You mention that you have kyphosis. Are both of those pictures of you? I'm just asking because, while you have kyphosis, I have hypokyphosis in which there is no rounding of the upper back at all (well only 6* in my case when normal is 20*-40*, I believe). I have the same shoulder blade problem even though we are opposites. The reason for my problem is a very high and tight thoracic curve that creates quite a rib hump under my shoulder blade. I'm sure I don't need to say more as you can imagine what that does to the shoulder blade. I, too, am "in the middle" so to speak. Not quite bad enough for surgery, but bad enough to be self conscious. I'm 43 and my scoliosis has started progressing over the last few years. I've developed a new hump that sticks out of the opposite side of my shoulder blade hump. This rib hump isn't in the back, but on the side.

I've discovered a way that really hides it. Granted, I am a woman and have more clothing choices, but there are men's clothes that are similarly designed. First, I stay away from skin tight shirts. The shirts that fit the best are the well taylored button-up shirts with a larger collar (I'm not talking '70's large, but within reason). You can get taylored men's shirts in department stores that sell suits. Not all men like a straight cut. My husband has some very nice name brand taylored shirts that I found at Goodwill. He doesn't have scoliosis, but this is how I know they make them. Anyway, for my shirts, I wear a tank top underneath and leave the top couple of buttons undone. I have also seen this look on men and it doesn't look femmy at all. I think this style works MUCH better than the baggy look, as baggy clothes look like you are trying to hide something. The look I'm describing accentuates the neck and the waistline. I don't tuck my shirts in and they are rounded in the back. With men's shirts I think they make them so that you can either tuck them in or leave them untucked. I would suggest leaving it untucked IF the shirt isn't too long and the waist is taylored in enough. I hope this helps, as I do remember your other thread about clothing. That's why I'm mentioning it here.

On the more serious side, have you seen a scoliosis specialist recently? You really need to find out what is going on with your back. Degrees of curves, types of curves, rotation, disc health, etc. Find out if you are a surgical candidate.
I hope I have been somewhat helpful.

Sincerely,
Rohrer01

http://i1188.photobucket.com/albums/...em/zzz1bbc.jpg

yes picture A and picture B above are of me. A shows my right arm at my side, and B shows how my hump comes out when I lift and extend my right arm.

For years I would buy extra large Tshirts and NOT tuck them in. But the extra large were too long and its obvious i'm trying to hide something because I'm a medium.

Someone suggested in my other thread I find WIDE-NECK shirts, and that is something I've begun to explore, but it's very difficult. Women have all various neck widths when it comes to shirts, but most men's shirts hug the neck very tightly. With spring and summer coming, I'm hoping I'll have better luck finding wide-neck T-shirts for men.

[so_shy]

hi so shy
just a suggestion...
surgery has come a long long way from the "old days"
maybe you won't want surgery, but it might be a good idea to visit
a good scoli surgeon, one RECOMMEMDED by someone on forum who
is familiar with the surgeon...a doctor who sees scoli patients all day
long, and who will have nothing but positive suggestions for you...
maybe i missed it, but i didn't see what state/city you live in...??
most major cities have great scoli doctors....and even some
smaller towns...sorry, my native New Yorker prejudice showing...have good scoli
docs as well....
why continue to suffer when there might be a solution...?

i retired as a social worker...but i would also suggest a therapist, just
someone to talk to, to open up to, someone who doesn't judge, a good listener...

just ideas to consider.....

jess

In the 1980s, the old days, no one would think of doing surgery on me. But a decade ago, the specialist I saw still said it wasn't serious enough to warrant surgery. Is a decade ago the old days?

As far as going to therapist, I used to do that. It didn't help. I don't ever discuss this problem with family. I tried a long time ago, and was told to just live with it.

So now this message board is my only place to discuss this problem. And I am comforted. People have been so supportive here. They have given me some good suggestions like looking for wide-neck shirts. But I have to admit acting on the suggestions have presented a whole new set of challenges, because I have no family support, no one in the real world to help me. I have to secretly go searching for shirts for example and the few trips I've made to some department stores created tremendous anxiety, fear, and so far failure (in finding those wide-neck shirts that were recommended I look for).

[rohrer01]

So_shy,

Even if they still have the same technology as 10 years ago, which I'm not sure. YOU could have changed in those 10 years. It's a good idea to have your scoliosis/kyphosis followed at least every five years.

It's too bad that you don't know someone else with health or self-esteem problems to befriend that could be your support and you could support in return. That would make shopping a LOT easier if you had a buddy to go with and give you honest opinions.

You could always do the photo thing like you did for the previous pictures in various items and ask opinions here. I don't know what other suggestions to give you in that regard. But you would need pictures that depicted you from the front and from the back as well as the side views.

I know that they have a "dressing your curves" in the adolescent section of the forum, why not the adult side as well?

Best Wishes,
Rohrer01

[so_shy]

You could always do the photo thing like you did for the previous pictures in various items and ask opinions here. I don't know what other suggestions to give you in that regard. But you would need pictures that depicted you from the front and from the back as well as the side views.

I know that they have a "dressing your curves" in the adolescent section of the forum, why not the adult side as well?

Best Wishes,
Rohrer01

Thank you Rohrer01

I'm going to do that. I'm going to take some more pictures, different angles of my back, and maybe that will help. As I said, I don't share this problem with anyone so it's something I'll have to wait until I have some privacy (as I said, I stopped expressing the emotional pain of having scoliosis with family members years ago when they basically made me feel guilty about it, telling me to stop whining and just live with it).

I think if I take some pictures of me in certain types of shirts maybe that would help too, as others might see solutions I can't.

What I'm amazed is how others with scoliosis, and with rib humps worse than mine, are able to get on with their lives. I wish I had their inner strength.

I do hope some day I'll find a clothes solution. I so badly want to just breathe again, just feel ok in my own skin. (I literally burst out crying when I see myself in the mirror, when I see my hump pop out in my shirts. I literally get sickened. And that's in my own home. When I go to try on clothes in stores, and I do that a lot less these days because it's always such a nightmare experience, I often have to compose myself in the dressing room because the clothes never fit and I get sick, dizzy, and tearful.. I'll sometimes sit just a few minutes in the dressing room or compartment and try to clean myself up. And as I leave the store, I feel just horrible. And it's almost torture going through a store and seeing all the different types of shirts and knowing everyone else can just go and pick any shirt they like once they find their size and buy it, but I can't. I sometimes sit in the car and start crying. Again, I wish I knew how other people with our condition get by because it has simply destroyed my sense of self. How I miss the days so long ago, like when I was seven or ten years old, and just put on a shirt and never thought twice about it. Those days before scoliosis. I so miss that feeling of just being comfortable in my own body.)

Just to add in my edit, I realized it's the magic shirt. I'm looking for the magic shirt. Where is that magic shirt? Will I ever find it?

[JenniferG]

So shy, it saddens me that this is so difficult for you. I might have missed this earlier, but have you considered surgery in order to fix the physical side of the problem? I am not suggesting this will fix the emotional problem, but it may help a lot, raise your self esteem for instance.

As for my pre-op shape: the world is full of different shapes and sizes, abilities and disabilities and we are all part of the world. For the most part, I ignored my scoliosis. If people noticed my shape, they did not say. If they had, I would have spoken about my scoliosis openly because it's not a crime or anything to be ashamed of. I think therein lies the problem, you appear to be ashamed of your scoliosis. Have I got this right?

We are all so different in every way, including emotionally, and your feelings are as valid as anybody else's. You seem to be suffering so much emotionally, which is why I am wondering if surgery has been considered.

Meantime, good luck with the clothes situation.

[so_shy]

but have you considered surgery in order to fix the physical side of the problem? I am not suggesting this will fix the emotional problem, but it may help a lot, raise your self esteem for instance.

I think therein lies the problem, you appear to be ashamed of your scoliosis. Have I got this right?

Yes as I explained in another thread and I think in this one too earlier, I saw specialists and they all said I was between mild and moderate and not a candidate for surgery, despite the physical disfigurement. I pleaded with some of them but they said they can't and any qualified doctor would not do such drastic surgery (the rod surgery that some on here have had) to help me overcome the emotional/psychological damage. They made it very clear, a patient's emotional/psychological damage is not a criterion for performing such surgery. They go be severity, by how many degrees the curves are, and if there is progression of the curvature.

When I realized I wasn't a candidate for the "rod" surgery (again, that many on here have had) I went as far as seeking out doctors to find out if there was some scapular surgery to remove or lessen my hump. I inquired about cosmetic surgery for the shoulder blade. I asked doctors, "Could you cut out my scapular? Could you cut off some of the scapular? Could you insert something to restrict my scapular to stop it from protruding when I use my right arm?" And they all said there were no such surgeries. One even said something to the effect of even if there were a surgical procedure to cut out or cut off part of the scapular, it would require cutting into a lot of muscle that would damage the muscle.

So all I'm left with is finding clothes that fit. Finding shirts that don't hug my hump, if you know what I mean.

And it's been a very frustrating search.

It's so frustrating. I can't even by a pack of Fruit of the Loom or Hanes basic white T-shirts.

The only possible partial solution is as a few have suggested, that I look for wide-neck T shirts (shirts where the collar doesn't hug tightly around the neck, like women's shirts). But that has been a struggle. I've gone to a couple of department stores and had no luck.

(you can see that difference, how women's shirts have a variety of neck widths compared to men in this comparative picture:
http://i1188.photobucket.com/albums/...00hshaccc2.jpg )

I wish in the men's sections of clothes stores there was a section called WIDE-NECK shirts. I wish there were popular brand names of men's wide-neck shirts.

[so_shy]

I do think scoliosis/kyphosis is psychologically much harder on men then on women. That goes against everything I would have thought before participating in scoliosis forums, but I've seen it so many times now that I just accept it.

So shy, my son (who is also quite sensitive about his curves) has had very good luck with suit jackets. Although he's not really the kind of guy/young man who would otherwise wear jackets, they just look so good on him that he's gotten used to wearing them. You can find very casual jackets that you can wear with a t-shirt and not feel too dressed up. Lots of guys also wear hoodies (although my son drew the line on them, deeming them "just too casual" )

I'm sorry it's so hard, and I hope you get some relief.

Yes, hooded shirts, jackets are helpful during the winter months. I have plenty of those.

My problem is summer and spring and fall. Wearing basic T-Shirts. Like Hanes. Or Fruit-of-the-Loom. And every other T-shirt that most men wear.