MY FIRST ENTRY/STORY |
Jan 05 2013 |
Years ago in elementary after gym class, the entire class lined up outside of the school nurse's office. I remember bending over while touching my toes. The school nurse noticed something. I wasscared, because I was the only one who had to return to the nurse. All the other kids were fine.
Not to blame the woman I love the most... But, I told my mom about the school nurse finding something "wrong" with my back. She practically blew me off & didn't try to see what I was talking about. SMH... (If I ever have a child, I'm going to listen to everything they tell me. EVERYTHING!)
Year or two later... Mom notices my back being deformed. A hump. And at that time... I still didn't think to put two & two together about how that nurse found something. Anyway... As a teen, I remember mom & dad taking me to get x-rays & MRIs. I remember a doc. suggesting surgery, but after seeing how my mom cried... I didn't want to go to any more doctor visits. She feared I could be paralyzed if surgery was done & I, too, believed my mom. I was too young to do anything about this. I believed I couldn't be helped. And the internet wasn't so popular & improved like it is now!
My hump grew bigger & bigger throughout my years. I caught hell as a kid. And still today as a young adult... I kind of still do. I won't go into details about the teasing, the stares, being uncomfortable & being in constant pain. It'll just make this story even longer!
All I can say is... From the time I was diagnosed with scoliosis, I've had nothing but dark moments in my life. It's always been hard to be happy, to love life & to just be COMFORTABLE. I've been in this physical AND mental painful state for too long.
I think me signing up for this group site is about the first step I've taken so far. I have no health assistance... nothing! I work over thirty hours a week & I guess the older I've gotten, the worse my scoliosis has gotten.
It's time for me to do something. I haven't had an x-ray done in forever, but I'm assuming/estimating my curve is about a 100 degrees or more.
I don't know about searching for help, but that's what I'm concentrating on now.
It's May 2011 & hopefully... I'll be where I want to be later on. I believe this site could help me.
Comments (35)
I DON'T KNOW WHY THE DATE ON THIS IS 1999. BECAUSE IT'S 2011!!!
Dear MSgratitude,
I hope you get the help you need information etc to get well. I know you must be in a tremendous amount of pain.
Could you go to welfare, social serviced, or social security and try to get on temporary disability to get help with the surgery if you decided to go through with it? The best thing would be to talk to a social worker -they would know the route for you to take. It may be a long wait so get started now -It will be well worth it!! Good luck!!!
I hope you get the help you need information etc to get well. I know you must be in a tremendous amount of pain.
Could you go to welfare, social serviced, or social security and try to get on temporary disability to get help with the surgery if you decided to go through with it? The best thing would be to talk to a social worker -they would know the route for you to take. It may be a long wait so get started now -It will be well worth it!! Good luck!!!
well hun. i have a strong feeling that you are GORGEOUS! and THATS why people just cant stop looking at your AMAZING EYES! they just cant haaaandle the fact you're perfect the way you are. and you know what. i pray for your pain to be lessened and for people to get ooover themsleves.
~ im really not a druggy, i just love to dance!~
~ im really not a druggy, i just love to dance!~
I'm so sorry you have to go through this pain associated with the scoliosis and I sincerely hope you can get the help you need, eventually. I'm 52 years old and the one bit of encouragement I can give you, is that although kids and younger adults may be less understanding and critical, the older you get you will find people to be more compassionate. I was born with clubfoot and although I wore corrective shoes as a toddler, etc., I still have somewhat deformed feet. I use to be so self-conscious because people were more critical. I've chosen not to go through with the foot surgery...my daughter was born with the problem and has had the surgery, my sister has had it too. It was an extremely painful surgery and although my feet hurt somewhat...they still work and I don't even know if the surgery will be successful...So now, I wear flip flops or whatever I want. I don't care what anyone thinks or says, but they really don't say much around me, anymore. I guess there are some benefits to getting a little older! 
Take care.
Take care. 
Dear MSgratitude, I too have a back condition(I hurt my back really bad at work in 2007) and I also do not have insurance(my husband lost his job last year) and I am all too familiar with what pain is. There are days I have thought about suicide cause I am not sure how much more I can take. But on my good days I think of my beautiful children and all the people that love me and you should concentrate on that also dear, people will stare and be cruel no matter what its sucks but it is human nature if there is ANYTHING different about someone they want to stare but remember GOD made you as you are and he NEVER makes mistakes. You are beautiful and I will pray for you and hope that you can get the support you need. Keep your chin up and smile.
you are a strong lady, and you shuold stop minding what they say about you nd keep holding on and SURVIVING
Twinkle twinkle little star
how I wander what you are,
as I see you grow so tall,
diamonds sparkling in your smile.
Little Angel flap your wings,
fly away in to your dreams,
singing songs of stars and moons,
dancing to the music of your heart.
Bringing love to my darker parts,
with a smile that shines brighter than any light.
A LITTLE POEM TO CHEAR YOU UP
how I wander what you are,
as I see you grow so tall,
diamonds sparkling in your smile.
Little Angel flap your wings,
fly away in to your dreams,
singing songs of stars and moons,
dancing to the music of your heart.
Bringing love to my darker parts,
with a smile that shines brighter than any light.
A LITTLE POEM TO CHEAR YOU UP
Hey,
As I was growing up as a child i was stared at and bullied beacuse i had seizures, and narcolepsy through high school. This caused my depression and social anxiety. which in effect now causes me to be a hermit crab and makes my narcolepsy worse and it all goes around in a circle.
What i am saying is, you have done a trimendus job overcoming all the stares, and looks, and yes they must have been admiring your pretty face.
People like you for who you are not for what you look like or because of a lump on your back.
Keep up the gd sprirt.
As I was growing up as a child i was stared at and bullied beacuse i had seizures, and narcolepsy through high school. This caused my depression and social anxiety. which in effect now causes me to be a hermit crab and makes my narcolepsy worse and it all goes around in a circle.
What i am saying is, you have done a trimendus job overcoming all the stares, and looks, and yes they must have been admiring your pretty face.
People like you for who you are not for what you look like or because of a lump on your back.
Keep up the gd sprirt.
Ms. Gratitude,
I was diagnosed with Idiopathic Scoliosis when I was 13 at school too. I had corrective surgery with the Harrington Rod inserted into my back and fused to my spine using bone removed from my hip six years later. I was in the hospital for five days and had to learn how to walk again. The best thing you can do now is see an orthopedic surgeon again and have that doctor take new x-rays. If your curve has really progressed to 100 degrees then you will need to find out if this is causing any pressure on your heart and lung. Since you are still young this would be the best time in your life to have surgery because your body with recover faster with less complications. If you have any more questions about surgery or any other Scoliosis concerns feel free to contact me
I was diagnosed with Idiopathic Scoliosis when I was 13 at school too. I had corrective surgery with the Harrington Rod inserted into my back and fused to my spine using bone removed from my hip six years later. I was in the hospital for five days and had to learn how to walk again. The best thing you can do now is see an orthopedic surgeon again and have that doctor take new x-rays. If your curve has really progressed to 100 degrees then you will need to find out if this is causing any pressure on your heart and lung. Since you are still young this would be the best time in your life to have surgery because your body with recover faster with less complications. If you have any more questions about surgery or any other Scoliosis concerns feel free to contact me
Hello Hun, I am 25 yrs old....and i am not tyype to the judge ...and i tell you now as we all know that the young adults and teens are so judemental...and even ppl my age...but i do not judge and i say is ur beautiful the way u are...and i am sorry you have to deal with this pain...people are so mean....they are incosiderate and just have no respect for their elders...tehy think if someone has some kind of disability visible or invisible...they dont seem to unded bnrstand that people with these are god gifts...but i am sorry andgoo i hope you do get to get where are comfortable hun...god bless u!!
my younger bro went through the same thing, he had corrective surgery he also went through alot of pain. but from what i gather the procedures are far more advanced now! if u go through with it it wil be a struggle u need to way up things to judge if its worth it. i myself was diagnosed with cmt about 3 years ago. and i think! they could be related as its a gene thing and hireditory. But i have seen the opp. and it has far more success these days so if u decide to go through with i wish you all the luck in the world.
bash
bash
Hi I don't know anything about your condition or the pain you go through. I do though empathize with you and commend you for going out in the world everyday and dealing with what they throw at you. I try my best to smile at people with physical deformities and to let them know my stare is not at a monster or weird person but as someone with a difference. I do have a mental illness so my issues are not there but do believe I get ridiculed and treated differently but mostly by those that know my condition and in my family. My Mom hasn't listening in over 30 years and will not take responsibility for things that should have been handled differently so be thankful for a Mom that cares enough to cry.
I hope this site is helpful for you. Thank you for sharing doll. Love peace and hair grease
I hope this site is helpful for you. Thank you for sharing doll. Love peace and hair grease
I'm surprised Texas Scottish Rite Hospital in Dallas was never suggested for you in the early days...they deal with scoliosis 24/7! 
Strong woman, although acupuncture won't cure this, it can truly alleviate pain. And there are some amazing alternative healers out there. (Yet, do the main doc thing too)
If insurance is a problem, keep in mind that some alternative docs (like the acupuncturist) will do barter. Paintings, cookies, fresh bread for XX amount of time...we all have talents to share.
I pray that you have an easing of the pain.
Blessings,
If insurance is a problem, keep in mind that some alternative docs (like the acupuncturist) will do barter. Paintings, cookies, fresh bread for XX amount of time...we all have talents to share.
I pray that you have an easing of the pain.
Blessings,
Dear Ms. Gratitude,
I really don't have any advice but to try to go to a doctor again. I just wanted to tell you that I'm thinking of you and sending a prayer for you. I hope you are getting the help you need. Don't worry about people staring or teasing. They just do that because of their own insecurities. I'm sure you are a wonderful person and that's all that matters. All of us on here know how you feel and I promise you will have the best support ever in this group!! WELCOME!!
Gentle hugs,
Kay
I really don't have any advice but to try to go to a doctor again. I just wanted to tell you that I'm thinking of you and sending a prayer for you. I hope you are getting the help you need. Don't worry about people staring or teasing. They just do that because of their own insecurities. I'm sure you are a wonderful person and that's all that matters. All of us on here know how you feel and I promise you will have the best support ever in this group!! WELCOME!!
Gentle hugs,
Kay
My school missed my scolosis all together. It was never treated. I have nightly traction now, it hurts.
i have moderate scoliosis but people dont ever really notice. im glad. but i notice every day. it's painful.
I'm 33 and I have mild scoliosis. It was caught by the school nurse in 10th grade and promptly "blown off" by my parents until about 3 or 4 years ago when it was caught by one of my doctors. It's pretty mild though so it doesn't interfere with anything really, just causes pain. I don't even list it here as one of my medical conditions because I tend to ignore it completely. I do hope you find the help you're looking for and can find a way to be happy. It's worth a lifetime in pursuit.
Have you found help yet? Any insurance gods drop from the heavens? I know it is frustrating trying to get the medical help you need/deserve. Do you qualify for state assistance (medicaid) and have you tried applying for social security disability?
I am (was) a pediatric RN who specialized in orthopedics, largely including children with scoliosis coming in for spinal fusion surgery. I did this for 10yrs before I had to quit due to worsening rheumatoid arthritis, so I can't imagine the struggles, frustrations, and pain you've gone through thus far. A 100 degree curve is so severe and must be extremely painful.
My only suggestion would be to try to get on state medical assistance (if you haven't done so already) and to apply for social security disability (also, if you haven't already done so). SSD is a pretty long process, but I had a great experience in that my application sailed through without problems. It sounds like you would be a great candidate to be approved as well.
Are you still working? If so, you are amazing! I truly wish you the best.
I am (was) a pediatric RN who specialized in orthopedics, largely including children with scoliosis coming in for spinal fusion surgery. I did this for 10yrs before I had to quit due to worsening rheumatoid arthritis, so I can't imagine the struggles, frustrations, and pain you've gone through thus far. A 100 degree curve is so severe and must be extremely painful.
My only suggestion would be to try to get on state medical assistance (if you haven't done so already) and to apply for social security disability (also, if you haven't already done so). SSD is a pretty long process, but I had a great experience in that my application sailed through without problems. It sounds like you would be a great candidate to be approved as well.
Are you still working? If so, you are amazing! I truly wish you the best.
"Without courage, wisdom bears no fruit."
You are an inspiration to me. I wish you all the very best in the world, because you deserve it.
You are an inspiration to me. I wish you all the very best in the world, because you deserve it.
These are old comments, though I feel compassion for the writers here. My pain is from Spinal Stenosis, and makes me unable to walk without a walker. Do any of the folks here have this problem? The pain is constant, when I try to walk. In a chair I have no pain at all, but I do have to sleep in my chair. I can't sleep in a bed. This has been going on for about 5 years. If I say that I am 85 years old, will I still have someone with whom I can chat? My family say I am "perky" and I do get along quite well with younger folks. Nice to find you all.
There is much that can be done these days. Surgery being just one thing
I too went thru something very similar in school. They noticed my back. The doctor wanted me to wear a brace minnesota brace or something like that. Of course, I didn't want to - I just wanted to be normal and already was being picked on. I had been born with heart issues and now come to find out there were other problems as well. You look beautiful to me...Keep smiling
I love your picture by the way. I am a big fan of Aaliyah I just wanted to say thanks for sharing, you are a beautiful soul
I just wanted to say thanks for sharing, you are a beautiful soul 
I am so sorry but I want you to know you are beautiful no matter what people say, if they something different it might be because they are jelious of you. People bring other people down to make them look and feel good. Don't listen to the negitive when you have great possitive all around you. Okay?
but I want you to know you are beautiful no matter what people say, if they something different it might be because they are jelious of you. People bring other people down to make them look and feel good. Don't listen to the negitive when you have great possitive all around you. Okay? 
Hi there. I am so glad to see your story. I can relate with your dark moments, hard being/staying happy, uncomfy, angry, and like you, I have taken this as a first step in getting my life in order...at least I'm hoping so cus right now, my head is a mess
For me, it's been devastating because I was in a committed relationship when all this took place on top of being a mother, though our oldest (daughter) is 21, and our youngest (son) is a month shy of 14, but it some way, it's affected my family as a whole. In fact, I don't know if she (my partner) even wants to really stay together. Ugh. entering a sensitive zone.
Hope to blog sometime
For me, it's been devastating because I was in a committed relationship when all this took place on top of being a mother, though our oldest (daughter) is 21, and our youngest (son) is a month shy of 14, but it some way, it's affected my family as a whole. In fact, I don't know if she (my partner) even wants to really stay together. Ugh. entering a sensitive zone.
Hope to blog sometime
Hi -
I'm new to this site. I've really been amazed at how much support there is here. I read your diary entry about scoliosis and was so moved by the way you expressed the struggle to be happy. I've had that same struggle. I never had anyone to explain it to. It has effected so many of my relationships.
The thing with your parents not doing something when you told them what the nurse said. Oh - I so relate. Except MY mother did do something at first. I ended up in a brace at 5 years old. In the next two years - my mother filed for divorce from my father. Their marriage was already bad but having to deal with my back problem just made it worse.
I had surgery when I was 11. That's a whole other story. I've had pain off and on most of my life. I manage - but when I am stressed it seems to be worse. The muscles are tight and the pain I can normally tune out becomes chronic and wears me down. It seems like when I finally say 'oh, I hurt' no one seems to realize that I have been hurting for a while. I'm just finally saying something about it.
I understand your struggle. I just want you to know that I get it - and thank you for being the first person to express for me how I have felt about this struggle. I don't feel so alone.
I'm new to this site. I've really been amazed at how much support there is here. I read your diary entry about scoliosis and was so moved by the way you expressed the struggle to be happy. I've had that same struggle. I never had anyone to explain it to. It has effected so many of my relationships.
The thing with your parents not doing something when you told them what the nurse said. Oh - I so relate. Except MY mother did do something at first. I ended up in a brace at 5 years old. In the next two years - my mother filed for divorce from my father. Their marriage was already bad but having to deal with my back problem just made it worse.
I had surgery when I was 11. That's a whole other story. I've had pain off and on most of my life. I manage - but when I am stressed it seems to be worse. The muscles are tight and the pain I can normally tune out becomes chronic and wears me down. It seems like when I finally say 'oh, I hurt' no one seems to realize that I have been hurting for a while. I'm just finally saying something about it.
I understand your struggle. I just want you to know that I get it - and thank you for being the first person to express for me how I have felt about this struggle. I don't feel so alone.
I understand your pain and the judgments from others of your physical appearance. I have RSD/CRPS, I am getting ready for open heart surgery and I have a physical deformity from birth(eyes). I have had plastic surgery to correct the birth defect, still need at least one more (but I am really getting tired of surgery LOL), and I am 44 yrs old and still get stared at in the grocery store check outs (you know when you can't get out of there way) I have heard adult women tell their children to ask me what is wrong with my eyes, I have actually looked at the women and told them to not be a coward and ask me themselves. I do explain nicely when approached no matter how frustrated I feel for the kabillionth time. What I am trying to say is I look in the mirror everyday and I can say that I like myself and when that stops being the case then I will probably get the last plastic surgery, then it will be for me and not for the staring society. To go along with my eyes I have a leg orthotic, it just gives them something else to stare at, hahaha. Now they can look at me from head to toe and see something wrong if that is what they choose to see. We all have out burdens to bare and no one should judge us until they walk in our shoes for even a minute. Because of this site and God we are never alone in out walk of pain (NOT SHAME). Hang in there and feel free to message me anytime.
I know all to well about judgement and ridicule. Although mine was a different story ( I had one parent...good target for bullying) never lose sight of who you are. No matter what the situation you are a beautiful individual and don't ever let anyone take that from you. I sure do hope you find all the help you need whether medically or emotionally. I am here if you ever need to vent.
Why can,t I get the site to add my Diary, I have a diary listed under fanciface, it say I need a diary to respond.
i saw this post on the sidebar and i want to say i am incredibly proud of you for posting and sharing your story. you're in my thoughts. 
I was diagnoced with this as a child also. thanks for the post....all the best.
I was made fun of as a child as well but never faught back. It is so painful to feel rejected. Thanks for sharing
God Bless you and your beauty.Try and get assistance from the state.I am an RNwith CRPSCRPS where a gal hit me and changed my life forever.You are so brave I will pray for u.Chanel33
Your post showed in Also Viewed, at the bottom of my profile- Proud of you Strong Beautiful Girl!
You may be near the medical definition of Disabled right now: Which would be GOOD. You may qualify for medical & disability benefits to get the medical care you need, and disability to help w/ loss of income during treatment. Don't stop looking for medical treatment! While scoliosis is degenerative, with treatment Doll, You can be considerably more comfortable, healthy and live a life virtually free of scolio. (Giuliana Rancic, suffered Severe Scoliosis as you do. She had the surgery, I believe in late teens, and was in a brace for a while.) With keeping up on lifestyle & exercise, she's pretty unstoppable! And you are too!! Don't lose faith Beautiful Girl, and don't stop perusing the medical care needed. Big Hugs Hon.
You may be near the medical definition of Disabled right now: Which would be GOOD. You may qualify for medical & disability benefits to get the medical care you need, and disability to help w/ loss of income during treatment. Don't stop looking for medical treatment! While scoliosis is degenerative, with treatment Doll, You can be considerably more comfortable, healthy and live a life virtually free of scolio. (Giuliana Rancic, suffered Severe Scoliosis as you do. She had the surgery, I believe in late teens, and was in a brace for a while.) With keeping up on lifestyle & exercise, she's pretty unstoppable! And you are too!! Don't lose faith Beautiful Girl, and don't stop perusing the medical care needed. Big Hugs Hon.
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