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Mobee211
07-18-2006, 09:10 AM
This post is not meant to upset anyone. I'm just looking to see if anyone else feels the way I do sometimes. I won't hold back or sugar coat the way I feel. But, I do not ALWAYS feel this way. But right now I definately do. I'm super nervous about my ortho appt and that feeds into all of this and makes it worse.

I have scoliosis but I also have a host of other medical problems. I had surgery in 2004 to remove my colon because it was diseased...and I was only 24. I've had so many problems healthwise and I just don't get it. sorry to sound like such a cry baby but it makes me FURIOUS. Right now I am going through a rough time, my mother has cancer and that alone is hard.

I'm now 26 and I hate my body so much. I have a poor image of myself due to being molested as a child and to top that off I have a very prominent rib hump that I hate. I'm seeing the ortho today to discuss options. Sometimes I get so mad that I want to extend my middle finger into the sky and yell "F YOU GOD!" I see normal healthy people walking down the street and I want to knock them down. Maybe that makes me an evil person. I hate feeling htis way. I am on the max dose of 2 antidepressants and go to therapy etc. I'm not always this down on myself, but the hatred I have for my body is always there...it waxes and wanes, but it never dissapears. It just isn't fair. Now matter what anyone says about everyone having problems etc. it is definately true that some people really get the shaft in life. And of course there are people wayyy worse than me and I feel for them too.

I'm just so angry with life right now. I cannot keep up with everything. I feel like I am dodging bullets left and right. I resolve one medical issue and then I am on to the next one. Will it ever end? I often think to myself that it would have ben better if my mother had an abortion. Heck, even a spontaneous abortion. I'm obviously an incredibly defective human being, and if survival of the fittest rings true, then how the hell did my fetus last for 9 months? Isn't the body meant to expel defective fetuses? Why am I even alive?

Elishadunaway
07-18-2006, 10:33 AM
I'm sorry you always feel angry, and you're right. It's not fair that you're stuck with a bunch of illnesses while others are seemingly healthy. While the illnesses are different, my mom is in a very similar situation. She battles fibromayalgia, diverticulitis, chronic fatigue, diabetes, and a host of other issues that she must deal with on a daily basis. And there are many, many times when she calls me (we live 2 states away from each other) venting and crying. But I still have 3 younger brothers living at home with her, so most of the time she keeps occupied with them and her job that she has to bring home on weekends sometimes. My point is, and I certainly don't know all the details relating to your illnesses and I'm not an expert on this topic, but even though there are quite a few times when my mom is down on herself, most of the time she keeps her mind on other things like my brothers' activities, her job, church, etc. so she doesn't dwell on her own issues 24/7. Now, I don't know if you're married with kids or have any hobbies and such to get your mind off your illnesses, but maybe it's worth a shot??? Also, you might think about joining a support group in your city to help you deal with everything. Online forums are great too for support! Anyway, I hope this helped you in some way. I'm sorry you're dealing with so much at only age 26. I wish only the best for you. Take care. I'll be praying for you.

Carmell
07-18-2006, 12:56 PM
I'm not a scoliosis patient, but I am the mother of an 11yr old boy with multiple medical issues, scoliosis being one of his biggest hurdles. Your post is a stark reminder of the future for many kids like mine. However, I'm hoping to cut this off at the pass (so to speak) by having him meet as many people with multiple issues like he has so he can see what great things people like him can do. Last summer (2005) Braydon and I went to a medical conference where there were other teenagers and adults who have similar medical issues he has. He was able to hear them talk about their daily bowel/enema plans and how they adjust their lives around their medical issues. They don't give up. They do the things that make them happy. One man in his early 20s plays for a Colorado minor league baseball team. When the team travels, he uses the manager's bathroom for an hour to do his daily enema. The rest of the team does not know about his medical issues. He also has severe spine issues (mild scoliosis, multiple surgeries for tethered spinal cord) which makes his legs weak. He's a pitcher, so he doesn't need to run like the rest of the team. His legs don't work like he wants them to, but again, he adjust to the circumstances. He knows he can't change his body, so he makes the best of what he has. All of the other teens and adults who shared experiences had similar stories. They all shared that there are many times when they are depressed or think life is unfair (life IS unfair! for all of us) but they find the positive things to look at. One teenage girl has scoliosis but also was born without an esophagus. Her colon was made to be her esophagus. She has to do an enema daily to stay "clean" and can't eat orally very well. However, she is active and goes to summer camps and shares her story with many people. I would hope that if you were to meet someone else going through mental and physical challenges, you would see that there is ALWAYS someone worse off than you are. I realize this on a daily basis. Good luck to you.

Mobee211
07-18-2006, 01:10 PM
Thanks for your posts. I don't always feel this terrible. Sometimes I enjoy my life. BUT, there is always the hatred of my body and the anger bubbling inside me. It may be lying dormant, but it does not go away. I have ocd, depression and PTSD from being molested as a young child. That clouds my thinking and I have to fight to get the pain and darkness out of my mind on a daily basis. I have achieved a lot despite the odds. I graduated magna cum laude from a prestigious college and am going back for my Phd. I have a full time job (which I will leave when I go back to school), great friends, a great social life etc. But I am still unhappy. I don't like my back and I think I deserve to be happy. I too have had a host of medical issues. I had my entire colon removed in 2004. Before that I could not eat solid foods without vomiting bile and daily enemas did not work for me. So, I had to go into the ER often to have golytely fed into my small bowel via ng tube. When that did not work I had ot take 60 laxatives once per week to go to the bathroom. Finally they removed my "dead" colon. Surprisingly I am finding that sometimes digestive disorders and scoliosis go hand in hand. It was hard being in college and having to be in and out of the hospital all of the time. I don't know why it is all starting to upset me so much NOW. Maybe because now I am an adult? Or have I just reached my breaking point? I don't know.

I'm glad that you are doing all that you can for your son. He is lucky to have a mom like you. I'm not a sad sack of an individual. No one sees this dark side of me b/c I keep it well hidden. Most of my family regards me as the over-achiever, the go-getter, and the brain. I just didn't want you to think I was some sad sack lying around saying "whoa is me!" because that is not the case. I just think that I deserve to be happy and to FEEL GOOD about my body. My self esteem and self worth has been negatively affected by the repeated abuse as a child and I am wrking in therapy to get beyond that and to love myself and my body. For some reason, none of my medical problems bother me. EXCEPT the scoliosis. I don't know why, and I don't know why NOW it is making me struggle to claw my way out of the black pit of despair. But I'm fighting it....and that is why I want surgery. I need to get the beast off my back!

Still, I am angry and sometimes I have NO ONE to relate to. My friends are in their 20s and all they worry about is how much $$ is leftover for beer at the end of the pay period. I've never been happy-go-lucky or carefree and I'm jealous, insanely jealous of those who are. I never even had a chance to be a child. I never had a time in my life where I did NOT have to worry about myself or other people. And now, in my mid 20s it is coming back to haunt me.

sorry...totally rambling and now sure I am making much, if any, sense at all.

Maura

sweetness514
07-18-2006, 06:31 PM
Hi Maura,

I don't even know where to start, or if I can say anything that would make you feel better. I know there are times when it's just all right to feel angry, sad, envious, jealous and sorry for ourselves and let it out, it's a circle that emotions go through and NORMAL. I once read an article in psychology about letting a person feel down instead of telling them to get over it and stop feeling sorry for themselves b/c at that point, that's just what would not help and the person just needs to feel what they feel.

I get pissed too, and I hate feeling like that. Why? because it makes me feel worse and I don't want to be consumed by hate and anger. I know what you mean when you see people healthy and worrying about silly things, as I did when I didn't have many problems in my young twenties. If only I knew then what I know now, I say. I have been through three surgeries and am still in pain. But I TRY to get back up by seeing worse and people who would KILL to be in my shoes. I don't have that many friends, and the last who understood some of what I went through died about this time last year, of cancer. She had a 4 year old son, and battled cancer most of the time he was on this Earth, so she never will see him grow up and didn't enjoy him much while she was alive, as she was sick. Then I think about countries that are poor, and the war, you know what I mean. We here have it good and that's why many people are spoiled and don't realize what's important and whine about things that would seem irrelevant to those starving people.

I can see you have a lot to be thankful for, and that you have made quite a life for yourself, with your work and achievements. That's what I would try to focus on when I feel down, in my case it's my hubby, parents and the fact that I can still walk and don't struggle for monetary reasons.

I just try to let it go at times and am allowing myself to feel sad, just not for days at a time, or that would seriously suck all my positive energy left.

Take care, and continue being strong.

Mobee211
07-18-2006, 07:15 PM
Thanks. I'm not having a great day today. I met with the ortho and he said no surgeon in his right mind would perform surgery on me because while, yes, my vertebrae are twisted and I do havea prominent rib hump, my angles just are not bad enough to warrant surgery. I sat there and cried and then told him that I wanted to put a gun in my mouth. And I meant it. And I do mean it. There is NO WAY in 2006 that anyone, ANYONE should have to walk around with a hump on their back. No way. And it angers me , like you said, when people say "get over it." get over it? Maybe if this was one of a few things I had to deal with. But being raped and sodomized at the age of 4, developing post traumatic stress disorder, OCD, depression and then horrible GI problems from the anxiety and memories of the abuse resulting in massive surgery for a colon with dead nerves. Oh and then there is the hypothyroid, the rectoceoloe, the keloids and I could go ON AND ON AND ON. I can deal with that. I have dealt with it. But to add a hunchback on top of all of that?? No. No I cannot deal with that. Each person has his/her breaking point and this is mine. I can't be a saint or a martyr any longer. I need to feel GOOD about myself. I need to do something for ME because I want it. because, GODDAMN it I deserve to be able to stand up straight. I deserve that. I won't live to see 30 if I don't get this scoliosis taken care of. I know that in my heart.

bbest
07-18-2006, 08:24 PM
Maura -

I am so sorry you are having such a tough time. You have truly been though a lot and I cannot imagine how you must feel. I don't want to sound like a Hallmark card but I truly believe that everything happens for a reason. You are here for a purpose. Even if you don't know what that purpose is. You never know the impact you or your story can have on someone elses life. There could be someone out there asking themselves the same questions you posed. They might read your post and realize they are not alone. I have had many moments where I have asked "Why?" Why was I born with spina bifida? Why did I have a malformed spine? Why do I have to have this radical surgery? I think it would be abnormal not to question the reality of our lives. Please realize that you are not defective. You are a valuable human being and you are among people who care and want to help. I am here for you if you need to chat or whatever. If you feel like it you can send me a PM and I will give you my personal e-mail address. Hang in there. Life can be beautiful. Things can change for the better. You owe it to yourself to stay the path and not give up. I will be thinking of you and sending hugs and warm thoughts your way.

Brandi

meagain
07-18-2006, 08:31 PM
Maura, I read your post this morning with a sigh of relief that someone was as mad as I have felt this week. My anger is due to the finding of my 13 year old daughter's curve about 3 months ago. In three months I've gone through stages of grief, guilt, depression and now this rage that has me spitting nails, yelling at the dogs, and being very demanding.

Scoliosis is out of my realm of controll and I want to fix it now. My friend reminded me today that there are things in this imperfect life that we can't fix, that we must hand to our loving God.

Thank you for helping me realize that mad isn't always bad it's just dealing with life and reality. Take care, Megan

abhbarry
07-18-2006, 10:16 PM
Dear all,

Yes, I believe it is natural to feel angry and much better than holding it all in. Scoliosis is especially difficult sometimes because it is not something people truly understand, not even our friends or family, not matter how hard they try. For many of us, people look at us and say, "but you don't look like you have a disability," or I remember one girl in highschool saying, "I wish I had scoliosis so I didn't have to take gym." It can make us more angry when people can't recognize the struggles we face in our daily lives.

With that said, I don't mean to sound like a Miss Pollyanna, but I do believe everything happens for a reason. I was just talking to my friend who is 27 and battling cancer (and has lost her ability to have a child) and now her boyfriend just completely shattered his leg in a motorcycle accident. She said to me, "I have realized the true kindness of people through my cancer, but I just don't understand why this happened to him." Sometimes our questions to why something happens obviously may not become clear and quite frankly, I still can't tell you why I (or anyone else) have scoliosis and am facing surgery.

I do know, however, that I am allowed to have my days or moments when I am angry or cry and am frustrated, but overall I don't want to live my life that way. I also firmly believe that having a positive attitude does more for your healing process and coping than anything else can. Easier said than done, but very true. I hope everyone knows, like Brandi said, that we are all very blessed people, regardless of the enormous difficulties we face (I say this myself having a nice sized handful of other physical problems as well). The only reason I can see that we have scoliosis is to become stronger, more genuine people (not obsessed with trivial matters in life) and more compassionate to others (even though it seems hard when people complain about minimal aches and pains).

I am currently re-reading the book, Tuesdays with Morrie. It is a beautiful story about life, and I highly recommend it. It is a very quick read too.
I also recommend reading the poem, "The Invitation," by Oriah Mountain Dreamer - it is quite a sizeable poem, but I could include it in the thread later. They both remind us of what is important in life and I feel they are inspirational in how to stay strong.

Best wishes.

Shari
07-19-2006, 02:38 AM
Hi Maura,

I just had to chime in here!!! I think getting mad is never bad, but staying mad is not good. You're too young to let anger destroy your future. Life does come hard for some of us and it sucks.

I am so impressed with what you have achieved, with what you have had to endure!!! While I don't have all the physical problems that you have had, I was molested as a young child and I do have scoliosis. I have often said "why me!!!". I think we all have at one point or another.

We can physically hide being molested, but not scoliosis. But both are mentally challenging, and with everything else you have had to go through, you're incrediable in my book!!!

You're not alone,
Shari

Cakedec
07-19-2006, 06:56 AM
Dear Mobee,

What degree are the curve or curves of your scoliosis? The reason that I am asking is that I also had an ortho dr. who was supposed to be a scoliosis specialist tell me 12 years ago that my 65 degree double curves were not bad enough for surgery. Of course, I found out later and through this forum that surgery is being done for curves of 45 degrees or more, sometimes even less, if the pain or deformity warrants it.

What area are you in and what dr. did you see? Possibly you did not see the right doctor. Let us know and someone on this forum may have suggestions of someone in your area.

Deb

kazyn
07-19-2006, 07:32 AM
Hi Maura

I am sorry to hear you are so down at the moment. I know exactly how you feel though. I have had lots of medical problems since birth and sometimes wonder what I did to deserve this. I see my sister walking around with a beautiful figure and no health problems whatso ever and I can't help but feel that life can be so unfair. I seem to have gotten her share of problems as well as mine!

I guess what I'm trying to say is that you are not alone and that there are always others out here to support you.

Hope this helps

Karen x

Mobee211
07-19-2006, 09:49 AM
Thank you. It feels good to know I am not alone (not that I am glad any of you feel this way!!).

Anyway, my curvature is not severe...it is 34 degrees but the vertebrae are twisted as well, so my right shoulder is very rounded and sticks out. And I am in constant pain! And I have a rib hump. I should take photos to show you. I've seen others' pics and I can honeslty say that my rib hump looks almost the same as that of one girl with a 50 degree curve.

Anyway, the ortho I saw did give me the names of some surgeons at Children's Hospital in Boston but said they would not do the surgery...he thinks they will say no way.

Now, maybe mine is not as bad as some...but if it has bothered me since I was 16 and I am now 26 and it is just chipping away at my already fragile self esteem...doesn't it make sense to say that the ends justify the means?? Aren't there exceptions to the 40 degrees or more rule? What about someone who is SO unahappy that they have difficulty functioning on a daily basis because of their scoliosis?? I know the risks...I know I coul dpossibly die, but I would rather do it and get it done, than walk around and be miserable. And no, I don't choose to be miserable...I go about my daily life with a smile on my face. But the sexual abuse has scarred me so badly and made me feel SO BADLY about my body...now I am getting to the point where I am making headway in that area and realizing that fixing my hump would do wonders for myself esteem. I'm not a dumb kid, like the docs seem to think, this is something I have thought LONG and hard about.

jelysc613
07-19-2006, 11:57 AM
Hi Mobee,

I hope you are able to begin your healing process very soon. I know how hard it is to be that angry. I had my surgery when I was 12 and had been lied to by a doctor about it for over a year before that. I was so angry at the doctor, angry that I couldn't be "normal" (I was a very active child, but couldn't do the things I loved for 3-4 years), angry that children have to go through awful ordeals that traumatize them for life... I could go on and on. I was P!SSED, for a long long time, and cried myself to sleep on a nightly basis for about 2 years afterward.

I understand the "why me" feeling... and it's an awful one to be stuck with for as long as you have been. I am a counselor at an inner city high school, and have heard stories that make me physically ill, many like what you went through with the sexual abuse. I hope you have looked into resources in your area, as you may be able to find a support group or a specialist, which would truly help you not feel so alone. You really aren't alone, and it sounds like these issues are ones you feel a strong need to talk about and get off your chest. The fact that you are able to discuss them openly is incredible and I think you're a very strong person for being able to do so. I'm a firm believer in the healing power of TALK! :)

So, I hope you feel better. And you CAN find a surgeon who will operate on you... if you're in physical and emotional pain over this, you need to make someone operate! Just remember the old, somewhat cliche saying, that it's what's on the inside that counts :D The very best of luck to you!!

Mobee211
07-19-2006, 01:33 PM
Thanks again. I do hope I can find someone to operate. And you know what, I am not sure I will definately HAVE the surgery, I just need to know that I have that option! The way the ortho described it, I might die on the table and I might be incapacitated for life etc. I feel like he was trying to scare me away from it! Well I had a serious surgery with similar risks 2 years ago because I HAD to have it (medically I needed it or I would develop colon cancer later in life) and yes it sucked but I made it through and it was the best thing I ever did for myself!

sweetness514
07-19-2006, 06:41 PM
I hope you know about all the post op risks and loss of some flexibility, surgery is not the answer to all scoliosis patients and is a big procedure and with that good luck, it's your decision.

Mobee211
07-19-2006, 07:26 PM
Sweetness,

I am aware of the risks, yes. And I would not go ahead and have surgery without sitting down with a doctor and going over all of the potential risks, talking to his patients, reviewing studies etc. Right now I am being told nope, you don't have the option of having the surgery. That is not right. It is my body...my choice. Maybe I won't have surgery. But I deserve to be able to control what happens to my own body.

Thanks.

sweetness514
07-20-2006, 03:00 PM
I understand what you mean. But I also see the other side of the medal. When I said about the post op risks, I just wanted to make sure and you're right, it's your body and you should be able to have the decision. I do think that as much as you're in pain and sick of scoliosis now, I wonder how you would feel if you wouldn't get the results you want. That's all. I didn't know what exactly to expect before my surgery but excruciating pain from a patient who told me is what she went through for a while and even my ortho told me that there were not guarantees of resolving pain, and make my hump disappear 100%. That I knew, at least. I didn't realize how much patience, determination and time it would take to heal though, sometimes we never know until we live the experience.

But anyways, maybe there are reasons why surgeons don't want to operate on patients who have less than 45-50 curves, and I tend to trust their reasons.

Mobee211
07-20-2006, 05:07 PM
Thanks. I completely understand where you are coming from. And I'm sure everyone who wants this surgery wails "But I'm an exception because it is just unbearable to me!!!!" But truly, I am not lying, it is unbearable to me. I am not living. I am merely existing. I am so angry and depressed. I have hidden my emotions for such a long time and now, at 26, I am getting all of my issues out into the open and taken care of. I'm unloading. I'm not myself anymore...my hump has consumed me. My mother says she doesn't recognize me anymore. I drive home from work and catch a glimpse of myself in the car window and think "what if I just drive into this road barrier? Would I die, or would I just be crippled for life?" And I am sure this all seems super dramatized but really...it is how I feel. I'm tired of dealing with everything I have had to deal with and this one...nope. I'm gonna put my foot down and say NO. I won't live to see 30 if I don't have this fixed. I know that in my heart. I told my therapist point blank that I would end my life if I could not have this fixed. And I meant every word. I was not crying, or hysterical, just speaking the truth as I am now. I hate my hump so badly that I have actually taken to self injuring myself. I have never, EVER done this before in my life. I am consumed by this pain and I think it is impossible for anyone who has not gone through all the crap that I have gone through to understand. But, i know I won't eve rhave 100% correction. And I will have large scars, potential complications etc. I'm willing to deal with that because my spine will LOOK better. Without the surgery I will deal with pain, suffering, etc but with a noticeable deformity.