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Thread: I'm tired of this #$%&-ing pain!!!!

  1. #421
    Senior Member Cowboys_Place's Avatar
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    Dec 2005
    Northern California
    Pain has me at the end of my rope, I lay in bed night after night wishing the pain would go away even praying the good lord will take me away. Getting up and sitting in the chair is even worse I try to put on a happy face around people but it's gotten to the point that the pain is so bad I don't want to hang around anyone because I feel I'm bringing them down. And how the hell do you explain to someone you have pain in areas where there's no sensation. Most of them looked at me like I'm crazy
    Courage is being scared to death but saddling up anyway. .(John Wayne)

  2. #422

    Well, your story is so darn familiar. This will not be the last thing people will do to you to make you feel small. Looking at you like you are crazy is just one of the many delights which come the way of those with central pain.

    You can either let them get to you or you can say to yourself anyone who reacts that way is incredibly stupid and content to stay that way and tell yourself you pity them. It won't be true of course but you need to trick your mind into not caring what other people think.

    The pain is much worse than any social insult so to heck with them. Central Pain forces you to have your own world, where you are king and everyone else is insane. Hey, its you or them!

  3. #423
    Senior Member
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    Dec 2009
    Florida, USA
    Quote Originally Posted by dejerine View Post

    Well, your story is so darn familiar. This will not be the last thing people will do to you to make you feel small. Looking at you like you are crazy is just one of the many delights which come the way of those with central pain.

    You can either let them get to you or you can say to yourself anyone who reacts that way is incredibly stupid and content to stay that way and tell yourself you pity them. It won't be true of course but you need to trick your mind into not caring what other people think.

    The pain is much worse than any social insult so to heck with them. Central Pain forces you to have your own world, where you are king and everyone else is insane. Hey, its you or them!
    CP is so isolating. Among other things, it forces you to spend so much time trying to cope and manage pain that you cannot participate with others. The drugs and distraction steal some of your mind. Even in the CC pain forum, I feel as if my posts are just blah, blah, often can you complain about pain without feeling that way? So mostly I just hold it inside....which is, again, isolating.
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  4. #424

    Can Relate to a Constant Struggle

    Omg! I am so upset. I wrote a completely looooong post, and it didn't let me submit it, because I wasn't logged in. I put my heart and soul into that.

    Let me start again.... First of all, I just want to say that I am truly so sorry that the majority of you are dealing with such unbearable and unrelenting pain. From the posts on this thread, I can tell that y'all are TRULY suffering. Many of your descriptions and details in your posts reveal just how excruciating and torturous your pain really is. That really breaks my heart, and I wish that y'all could find some sort of relief or answers. No one deserves to suffer all of the time like that.

    Last night, I stumbled across this thread while trying to do research (yet again) for my own health problems. On google, I searched for "tired of being in pain all of the time," and it brought up this thread. It took me pretty much all night, but I read every single post on this thread. Wow, it has lasted for quite a while. But it was touching to see that y'all built a sort of family on here. And in some ways, it comforted me to know that I'm not the only one suffering in my body all of the time and dealing with so much. It sounds sort of twisted, doesn't it? It's like you get some sort of relief and comfort just knowing others are suffering too; however, there's that part of you that feels bad to know that someone knows what it's like to suffer on that level. But some of the things y'all have said just seemed like you pulled the words right from my mouth (or from my fingers lol).

    Now, I hate to disappoint y'all when I admit that I do not have spinal chord injury or central pain. However, even though I don't have those particular issues, I do have my own physical pains and health issues that bother me 24/7. It does take it out of a person to deal with physical problems and pain constantly that never go away, especially when it lasts year after year. Even though I don't have exactly what y'all have, I can relate in many ways to what y'all are going through.

    I know what it's like to feel set apart from your family and friends, because you know they'll never know what you're going through really or completely understand it. I know what it's like to lose friends, because I couldn't keep up physically, or I just couldn't relate to their lifestyle, because they actually got to do things and live their life, and I can't really do that with my situation. And also, of course they would get tired of me feeling bad all of the time. I know what it's like to get crazy looks when you try to describe or explain things, because people don't get it. I know what it's like when people try to give everyday advice (that seems completely idiotic) to your specific situation, which is FAR more complicated than they can ever comprehend. I know what it's like for people to tell you "you say you have trouble with this, but you do this," like they're saying they don't believe you. Most of all, I know what it's like to go from doctor to doctor, searching for some sort of answer and hope, only to be told that they don't know how to help you anymore or it's just your condition and you'll probably have to get used to living like that. And one doctor even told me that people "get used to living in chronic pain." What a joke. No one gets "used to" living in pain all of the time. It makes me wanna do this to him and tell him to get used to that pain. lol Anyway, another thing is I know what it's like to ask for pain meds to numb your body from the bad feelings that it experiences on a daily basis, but to be denied. Sadly, I also know what it's like to go to bed at night, crying yourself to sleep and praying you won't wake up the next day, because you know nothing will change and that you'll just feel bad again and begging for God just to relieve you completely of the pain once and for all. It's bittersweet to be able to be able to relate, especially with something horrible.

    Another thing I want to say is that one guy, who was on here giving everyone a hard time and calling y'all "whiners" and "cry babies," was just probably looking for somewhere to get his anger out about his own pain. I bet he either has other people he complains to about it, or he just attacks other people to unleash his anger about his situation. I guess that's just his coping strategy. But I definitely think y'all have a right to talk about how you feel. It's okay to say it's not fair and to say "this pain fucking sucks." It's okay to cry. It's okay to get angry. And it's okay to talk about it and express it. In fact, I think it's better that way than bottling it up until you explode and do something drastic that you regret (like maybe even harm yourself or someone else, because it'd be easy to since pain has a definite tendency to always leave you set on the edge *sorry, I just wanted an excuse to use this emoticon lol*). So, feel free to let it out people. You definitely have a right. And I hope y'all can help each other find some sort of solution.

    Since I feel like I know y'all's personal struggles and experiences, I'd like to share my own. One thing I sort of envied about y'all is so many of y'all are incredible writers. Your descriptions were vivid and could make you feel the pain. I wish I knew how to describe my pain. Mine's not easy to describe. It's not really like a sharp pain most of the time.

    I was born with a very rare genetic disorder called Multiple Pterygium Syndrome, also known as Escobar Syndrome. It's so rare that most doctors have never even heard of it (so, you can imagine how fun that makes it for me to go to the doctor and try to look for solutions). Most of the time, I pretty much just take a paper with me that tells mainly what my condition causes. It causes excess skin webbing among various joints of the body, such as under the arms, behind the knees, and with the fingers, etc. This limits range of motion. So, I can't stretch out my legs all of the way (and same scenario for my fingers). Also, it causes a "webbed neck," which is where the head kind of just goes into the body. The neck is extremely short, and makes it look like the person doesn't even have a neck. The neck bone is very frail, and the bones in it are fused. So, that limits range of motion with the head too. I can't really look to the sides. Also, the condition causes rocker bottom feet (a bone where the arch should be), progressive scoliosis, crouch stance, which is where the body naturally slouches forward because of low muscle development, and that probably causes the scoliosis too. The condition causes low muscle tone throughout the body and maybe even absence of muscle in different areas.

    The two biggest problems I face with my condition is with the breathing and with the muscle weakness. It's hard to explain the breathing issues and the muscle weakness. With my breathing, it feels like I'm almost suffocating a lot of times. It's like i need to get air and I can't. Then, my body will occasionally do this noisy gasp like sound and take a bit of a deeper breath than normal. But it only relieves it for a second, then it's back to feeling like i can't breathe till it does the next gasp (I can't really control when it does it, it's like an automatic thing). And sometimes, when it does the gasp, it's painful, because it feels like my ribs don't want to give. It always feels like someone has my chest and the upper part of my belly in a really tight bear hug. It just feels like someone's squeezing me alive. Plus, I always feel this pressure like it just feels like someone is sitting on my chest. The pain of breathing gets even worse just after eating. Also, things like taking a shower wear me out.

    For the past year and a half, I've been on a mission, searching for solutions, especially for my breathing. I just wish so desperately that I could find something. It started off that I went to see a pulmonologist. I had a spirometry test, and that revealed that I have 32-34% lung capacity, which is severely low. Then, I had an echocardiogram (heart ultrasound) and blood gas tests done. These came back normal somehow. And my blood oxygen level has always been 98-100% everytime I got it checked at appointments. I had my pulmonologist check it when I got out of my wheelchair (because I can knee walk a little, but I try not to too much, because it hurts my left knee, and i get faint easily after a bit). Apparently, outside of my wheelchair, my blood oxygen level dropped fairly quickly. So, I qualified for oxygen. I use my oxygen concentrator all of the time now (especially since I don't get out much). However, it doesn't really help. I still feel all of the pressure and pain with my breathing that I described before. And even lying down and stuff doesn't help. The only time I am at total peace with my body is when I'm sleeping. Anyway, so my primary doctor ended up referring me to a cardiologist, because my pulmonologist didn't know what else to do. The cardiologist had me get a Cat scan of my chest, which revealed that a lot of my ribs in my chest are deformed. Plus, apparently, my ribs are sunken in with a condition of the chest called Pectus Excavatum. I have a severe case of it. My heart is moved to the left side of my chest, and my heart and lungs are probably being restricted by my ribs, which keeps them from completely functioning properly. The normal effects of severe Pectus Excavatum are heart palpitations, shortness of breath, chest pains, etc. However, my condition probably worsens the symptoms. Throughout the past few months, I was seeing different thoracic specialists to see about having my Pectus Excavatum corrected with one of the two surgical procedures used to correct it (the Nuss Procedure or the Ratvich Procedure). However, the doctors seemed concerned about operating on me with my muscle weakness. They said they felt like my muscle weakness is contributing to my breathing issues. Also, they told me many patients, who have just the Pectus Excavatum problem and not an overall condition, don't have as low of a lung capacity as i have or nearly as much struggles with their breathing constantly. This has disappointed me a lot, because I felt like I had found a solution that might could help. But the surgeries are very major. And it isn't known exactly how much they help with breathing (if they even do). Both procedures involve putting metal bars inside in the rib cage to push the ribs off of the heart and lungs and to expand the chest cavity. But even doing that doesn't mean everything just automatically improves.

    It does make sense to me that my muscle weakness is contributing to my breathing issues. I struggle with typing a lot with my fingers. Plus, I've always liked video games, and I struggle with pushing buttons really fast consecutively like you sometimes have to in different games. Most of my fingers are too curved with webbing to even use. I pretty much use my thumbs and index fingers. And simple things like lifting a plate of food or a glass with drink in it are harder for me. I can do it, but I'm more flimsy and wobbly at it. Plus, I struggle with my upper arms a lot definitely. Even brushing my teeth and putting on my make up tires out my arms. And my neck muscles are really bad too. If I'm showering, or doing something without direct support for my back, then I pretty much look down, because my head just goes down and is hard to hold up while doing physical activities. I don't know how to describe my muscle weakness. It just feels like my muscles fatigue easily and drain my body. And it's like if I'm doing something, then that body part just doesn't want to move after a bit of doing something. It's like it just gives out and wants to quit. And like I said, it can be simple tasks that people do without much thought. It embarrasses me with how weak I am. It makes me feel like a kid or something, and even kids are stronger than I am. But like I said, with all of the struggle with my muscle, it'd make sense that there are also weak muscles in my chest that are making my breathing difficult.

    I've always had breathing issues and muscle weakness. I'm not really sure if it has gotten worse or if I'm just mentally unable to deal with suffering all of the time anymore. I used to try to do things normally or as normally as possible. Now, I hardly get out of my bed or leave my room, much less the house. I haven't left in a month. I never feel like doing anything. Then, if I do something, I force myself to, and I don't enjoy it because I feel so weak and out of breath. Lately, I do good if I take a shower or wash my hair. And actually, my mom washes my hair now because of my muscle weakness with my upper arms and trouble with my fingers.

    I wish I could find more adults with my condition. I talked to one other young woman with my condition. She's 20 (I'm 25 by the way). She hasn't really found a lot of solutions herself. I think she uses a bipap at night for her breathing. i asked my pulmonologist about it, but I didn't quality, because my carbon dioxide levels were somehow normal, and you only qualify if you have higher levels of carbon dioxide in your blood. All of the other people with my condition are children, and I've talked to their parents. Of course, they haven't ran into the complications yet that you run into more as the person gets older. So, I can't really get advice from them. Then, they start ignoring my e-mails, because I am very blunt about how miserable I am. I'm sure I horrify them, and they hope their kids deal with it better than i do. I'm sorry, but I can't sugar coat it. I just tell people how I feel. I used to try to hide it all of the time to not drag others down, but I get tired of lying or playing along. And of course my parents and family and no one really seems to know how to handle it. And they get mad at me because I'm not dealing well, and they don't know how to help me. I have told them a lot that I want to die and how depressed I am and that I'm just fed up with my condition and tired of suffering all of the time.

    It makes me feel like I'm trapped in a nightmare, but the sad thing is that it's my reality. The next day and the day after that, I'll wake up feeling the same way and deal with the same things all of the time. What also really sucks is that my communication is bad in person. I have a hard time talking really with my breathing and stuff. I can't talk loud, and I run out of breath really easily. Plus, my speech isn't good. I guess a lot of it has to do with muscles and stuff and how my mouth formed. So, a lot of times I feel too weak to really even talk much, which is also some of the reason I don't like being around people.

    Now, I just mostly hide in my room, because whenever I am around people, I just want to talk about how bad I feel and finding a solution, and it's the same stuff all of the time. I just can't bottle it up anymore. I wish I could in a way, because now it's constantly flooding out. I hate how my body holds me prisoner and isolates me from the world with my speech and my weakness.

    And I don't know who to turn to for help. I can't really find people my age with the condition. Also, I don't know what group of the disability network I should reach out to in order to try to find answers. I thought maybe people with muscle diseases, but I'm not sure. I wish I could find out if there are any treatments for muscles like to build their mass or something.

    Any suggestions y'all could offer, I'd greatly appreciate.

    On this final note, I just want to say I don't get why everyone nowadays expects you to "overcome your disability." There are so many different types of disabilities. Not all of them are the same. Some are more severe than others. Yet, it seems like people expect you to live normal despite it, even if your body really won't let you. I have one friend, who has Spina Bifida, and she doesn't struggle nearly like I do as far as with muscle weakness, and she has no breathing issues. It's easier to overcome a disability if you feel worth a damn. But when you're hurting and struggling all of the time, it's not that simple. And I just hate how people make me feel like such a failure just because I can't "overcome my disability." It makes me feel like a bad person or insane and just incredibly alone. I feel so judged when people stop e-mailing me after I tell them that the condition is really bad and that it's ruining my life. I feel like I'm not allowed to say that. I wish I could tell them that I'm dealing with it great and am fine. But I can't be fine when I feel bad all of the time and struggle communicating. I'm never going to have a serious relationship like this. And with my health, I can't ever carry a child. So, why bother? I want those things in life like anyone else. But it isn't going to happen for me. But fuck people for judging me, just because I didn't live up to their standard and "overcome my disability" the way they thought i should.

    Sorry for the long message. I just had a lot to say. I hope y'all are doing okay (though I know it's hard to with dealing with pain constantly and dealing with so much all of the time). Please let me know if you can offer any suggestions for my situation. I do try to hold on to at least a little shred of hope that something will turn up one day....

  5. #425

    Nice webname. I felt better just reading it. The software at this site blanks out posting after a few minutes, so type it in Word and then paste it to the box. Or else save the post by highlighting and pushing control c then when you reload type control v and the text can be pasted into the box.

    Now, I have to say your post is one of the best I remember reading. Very authentic and will reach everyone's heart here. It shows how much people wth chronic disabling conditions face and how much more we need to emphasize research into rare diseases.

    A weakness in humans is that some of them love gossip more than anything else. The news services say they could write serious journalism but no one reads it, so we see the news talking about Britney, the Bachelor, what games and movies are popular, etc. It takes an illness to make us focus on the weightier matters of life. And they ARE too heavy, so we all wish we cared about Britney more and our pain less. Just put peoples comments about overcoming your disability into the gossip state of mind and then you may be able to ignore it. When I was in rehab, they couldn't do anything for my pain, so since I was doing fine at motor recovery, I felt a lot of the bootcamp overdone talk about overcoming my motor problems was more or less self serving change the subject from what they could not do, THEIR disability was uncomfortable so they focused on mine.

    I think what you will hear here is the hope you will SURVIVE your disability. One of the most demoralizing things faced is the expectation of other people toward you to overcome your disability. For many, this is like advising a short person to aspire to a career in the NBA, or like telling fat short smelly poor bald men that they should just act cool and pouting fashion models will flock to them. (Actually, even before my injury I never liked the "high priced dames"--wouldn't find a selfish person attractive) REALITY does not enter into these conversations. it is just an urban myth that someone in pain can easily slip into a mental mode where things click. (Actually, things sputter, shake, and grind so loud you aren't sure the machine is even still running.) It sounds the same for your Escobar syndrome. The physical aspects sound a little like XO syndrome, but I assume you have been checked out for that.

    My advice is to put NO energy into satisfying and pleasing the misinformed, and ALL energy into trying to cheat your illness by finding ways to enjoy life. As already said here, that usually involves some kind of tie with nature, like getting out, a little exercise, and if you can find a person bad off from any cause, they will usually believe in what you say and be sympathetic. It is surprising how helpful it is to find one person to blow off steam. I have one friend whose affliction is his divorce. He has to live on the street to pay alimony. His divorce was handled in New York while he was out of state. He did not even receive divorce papers and so was not at his hearing and was creamed. They even took his social security. They left him 106 dollars per month, which is what he lives on. He has many medical problems, all sort of minor, but in the aggregate he doesn't feel well. He knows NOTHING about central pain but he listens. I am not sure he believes much, but he is so used to people not believing him that he shies from disbelieving me. If you can find one person like that, you will feel better off for it.

    I am so sorry you have to live life like this. None of us knows why any of us have to suffer, but I do notice that people like us are real people, we don't put on airs, and we have a quality of humanness that is probably how humans should think about themselves. We pay a terrible price and can only hope that when life is over, the compensation will be worth it. What is the reward? Hopefully that we can be fit company for the angels so we feel comfortable there. Maybe even in heaven they need people with special talents at comforting others. What better pool to choose comforters from than those who suffered terribly on earth.

    Bollefen said here he feels dark angels following him. We have all felt that way much of the time, but somewhere back there is someone who loves us and sees us through the valley of death. Most of us would somewhere like to meet our real selves again. That would be the biggest shield against dark feelings. Flawed as I was, I would really like to be myself again. Sounds like you never got to be your real self in the first place.

    P.S. Some think your condition is due to deficiency in the tumor suppressor gene which allows winglike membranes to grow in the body. So as genetic research continues, maybe they will find a way to inject tumor suppressor gene into your body. Here's hoping something like that develops.
    Last edited by dejerine; 06-27-2010 at 03:33 PM.

  6. #426
    SLgirl - I was very touched by your very honest and heartfelt initial post.

    Your life trajectory is very different from others and I would not try too hard to make them understand what you are going through. There will be no understanding and able bodied people may not want to view into your world because it brings up uncomfortable issues of their own mortality and illness which they will have to face in the future. At 25 years old, that is hard to do because you want to measure up in other people's eyes but, as someone 3 years older than twice your age (53), I can tell you that that becomes easier with time.
    You write very well and have great communication skills, and should feel good about yourself for that.
    As kind as you appear in your initial post, you are certainly welcome here.

  7. #427
    Senior Member
    Join Date
    Dec 2009
    Florida, USA
    SLgirl, be proud of your accomplishments and ability to endure and cope. Your story is breathtaking and that's all I can say. You can't explain how bad the flu makes you feel to someone who has never had the flu and you can't explain serious chronic pain to someone who doesn't have it........
    2012 SCINetUSA Clinical Trial Support Squad Member
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  8. #428
    SL i'm sorry the condition you have to bear, I have no answer but offer a prayer.

    All you/I /anyone can be is what we are. Compassion seems to be lacking in many places, perhaps a reaction to one's self, hoping never to be so harshly tested and knowing they may fail when pushed. Or...

    I wish you peace and continue to go forward as you can, I admire your inner strength and tenacity.

    The Ketamine Kitty

    All the tears, all the pain, all the rage through the night (apolgies to the rewrite) RR

    Next time I die make sure I'm gone,
    don't leave 'em nothing to work on JT

    And I ain't nothin but a dream JM

  9. #429

    Thank you for the warm welcomes

    Ahhh, I did it again. I forgot to copy and paste my message before submitting it. I got the whole login error thing and lost everything I typed! This site is evil with that. lol I hate trying to remember everything I put. Actually, believe it or not, but I did forget a couple things about my health in the last message (as if it wasn't long enough anyway). lol

    Anyway, I just want to say thank you for all of the warm welcomes. I appreciate all of the kind words and understanding. Honestly, I was a little worried that y'all might be annoyed that I don't have the spinal chord injury and know exactly what y'all are going through. But I'm pleasantly surprised that my story touched you and that you seem to have open arms.

    To dejerine, thank you for your thoughtful response back to me. Actually, I didn't know that was in the genes and caused the webbing. Thanks for informing me. I'm not sure if the webbing was gone if it'd change my muscle tone. I wish scientists figured out a way for something to inject in people or give them to make their muscles grow or something.... I'm not sure if that sounds unrealistic. But actually, that's really what I'm looking for. That's why I was hoping stem cell research was further along than what it is, because I think they're working on coming up with something to inject to repair certain muscles and even replace some.

    Also, actually, I am pretty exercise intolerant with the way my breathing is and stuff. I did physical therapy a lot as a young girl, but it was always too difficult, and it never seemed to improve anything. Everyone kept thinking I just didn't want to try or that I was lazy. But now I realize that it's my breathing and muscle tone that is making me feel so bad.

    Thank you to those, who said that I communicate well on here. Sometimes, the thoughts are so clear in my head, and I know exactly what I want to say. However, in person, my speech limits me greatly. I can't talk like I want to, because there's so much I can't pronounce goods and certain sounds I can't make. So, it messes up my communication a lot, which really upsets me.

    About what I was saying about "overcoming my disability"..... Actually, according to society's standards, I have "overcame my disability" in some ways. Maybe not in a lifelong sort of way of continuing it, but I have pushed through my bad health to achieve and accomplish some things. I've always had pretty bad health issues, but when I was younger, I don't think I realized how different it would make things as I got older. When you're younger, it's normal to need help with things moreso and to not be able to drive, etc. However, the more older you get, and the more responsibilities and expectations that pile on, the more you realize just how different you are when you're so limited. I'm not sure if my health has gotten any worse, or if I'm just less able to deal with it now. As an adult, you have bigger dreams and goals, and you want to start accomplishing them, but when you realize there's so much you'll never be able to do and have, it's quite a disappointment. I just don't think I realized the extent of things when I was a kid. I mean, of course I saw different limitations and differences from my peers. However, I think I just thought it'd get better eventually or that things would fall into place.

    Despite my health issues and deep depression from it, I went to high school. I have to admit it was very difficult, and there were times I just wanted to drop out. I got sick of being different and being held back so much socially with my health and speech. And I got tired of feeling bad all of the time. But I did manage to graduate with a 3.7 GPA. After that, I took a year off. For a while, I wasn't really sure I wanted to go to college with the way my health is and stuff. I didn't see much point. But I decided I wanted to try to do something with my life. So, for a few years, I attended a local community college, and it seemed that I would switch off some and go full time some semesters and part time some semesters (which is one reason it took longer to get a two-year degree). Also, due to my health, I tried to take some classes online so that I wouldn't have to go everyday. Last year, May '09, I graduated with my Associate in Arts with a 4.0 GPA. Honestly, I have no idea how, because I've struggled with alcohol issues a lot, and then I was deeply depressed. I'm surprised I didn't quit (there were many times I wanted to during that time also, just like in high school). Now, people try to encourage me to go for my Bachelors. In a small way, I want to, because I want to have a degree in at least something. Associate in Arts isn't a degree really in a specific field. It's just a transfer degree you get so that you can transfer to a university and have different options for the type of Bachelors degree you'd go for. For a while, I planned on Journalism, but I don't know if I really want to go into that. For one, I don't really have the vocabulary for it. Also, I just don't have the motivation and passion to write. I'm just depressed all of the time. It's hard to write inspirational pieces in that state of mind. And I heard Journalism isn't doing so well with the computer and blogs coming out. It seems newspaper and magazine jobs are going down more. And with my health, I doubt I could honestly hold up a job. I don't know what to do. Honestly, I just don't want to do anything unless my health is fixed more. Yet, am I supposed to sit around in nothingness and rot?

    Anyway, I noticed that y'all haven't been posting on this thread quite as much lately. That makes me sad. I'm not sure if y'all are posting in other threads. I know when I stop talking completely and totally stop participating in the world or communicating.... it usually means I've gave up. Actually, lately, I'm at that point. I don't even call my good friend anymore.

    I used to call him for hours and talk. But it was mostly talk about: my condition and health, different doctors I'm going to, and my frustrations with my family and society not seeming to really understand my situation and how it limits me. Basically, most of the time, I'd complain about all of the things that make me miserable. And surprisingly, he has actually listened to it a lot and been there. He seems to try to understand my condition as much as he can from his perspective, and he isn't hard on me like most of the world seems to be. He does seem more understanding than most people. Of course, he definitely doesn't completely understand, and he doesn't claim to. He is able bodied and young at the age of 23 years old. Like dejerine was saying about the friend, who has been through a lot of obstacles in his life, it does tend to make someone more understanding if they've been through different things themselves. They might not be able to relate with their health; but if they've dealt with quite a bit, it changes them and tends to give them different qualities. That is the case with this friend. He actually has had a bad situation himself with different things. His mom has been an alcoholic for quite a while. Plus, he lives with her now to help support her financially, because it seems that she always has temp jobs that lay her off after a bit. He hasn't explained everything that has went on with her, but he seems very understanding about why she is the way she is and her struggles. I can tell that he loves her a lot and is very dedicated to her, despite her flaws. Also, he never had a dad growing up. His dad was out of the picture when he was really young (probably a toddler). And his dad has had crack addictions and got in trouble with the law a lot and has been in and out of jail for quite a while. He didn't really meet his dad till a year or so ago. And for a while, my friend lived with his grandpa and ended up helping take care of him when he developed Alzheimer's, and he helped take care of him until he died. So, he has definitely had to be the adult in a lot of situations. In a sense, I guess it has made him more mature than a lot of people around our age. And he does tend to have a lot of compassion and sensitivity about him. Between that and his silly sense of humor, that's why I've always had a crush on him since I met him online 2 1/2 years ago. We've had different issues, though, between my issues and his issues. His situations has gave him good qualities, but it has also messed him up in a lot of ways. I noticed it seems extra hard for him to get close to people. He said he has never really had a relationship or feelings like that for anyone. And he tries to keep his feelings closed off. Plus, he said it's just really hard for him to feel feelings like that on a really deep level as far as love. Also, he has went back and forth over the years with being back and forth about converting to a Jehovah's Witness.... That's definitely something that would tear us apart on different occasions. When he'd drift more from it, it would seem like he and I would get closer. But when he would pursue trying to get into it again, he'd get distant and be weird, talking about certain beliefs. So, I do believe the religion would kind of mess with his mind and split us up more. And I'm always afraid to lose him to the religion anyway. I just don't understand why things have to be so complicated.

    But despite all of that, he and I have always seemed to have a certain connection. When I thought I was having one of the major surgeries to correct my Pectus Excavatum, I decided I wanted to finally meet him. It was a crazy idea in a way. He lives 1,100 miles away in Omaha, Nebraska, and I only knew him through the net (though we had talked on the phone many times). I don't know. I just know my health is bad and that something could happen to me at any time. Then, with knowing the surgery could take my life, I just felt like it didn't matter anyway. I wanted to do something new I had never done before, and I was just curious how it'd turn out. At first, of course, my parents refused to let me fly up there alone with my health. But then, they knew it was what I really wanted more than anything. So, they let me. And I took the first trip in October '09. It was amazing flying for the first time. Everything was exciting and new, and it just felt nice to do something alone without my parents (but of course it was also scary). I couldn't believe I actually went through with it. But when I met him, it was probably one of the happiest times in my life (or as happy as I could feel with the way my health is and how bad I feel with that). It just felt nice to be there with him. And he pampered me and treated me better than any guy has ever treated me (most guys ignore me like I don't exist or seem afraid of me). He made me feel so special. I ended up staying a week and a half with him. Then, not too long ago, I flew back from April 22nd - May 13th. This time, I was a lot more depressed. I realized the thrill and rush of it being completely new were over. Plus, I just hated how much my speech limited my communication in person. I felt like I couldn't express myself how I wanted. And I got tired of feeling horrible while up there. Sometimes, I just wanted to come home and vow not to go back until I got my health better. It sucks to feel that way. I hate that my health ruins everything like that. Sometimes, I daydream what it'd be like to be healthy or at least be healthier than I am, and to pursue him the way I want without this huge burden constantly plaguing my life. And surprisingly, he did say when I was up there that he started having feelings for me. That did shock me with all of my limitations and differences. But he doesn't want to date someone far away, and he's not really looking to date anyone anyway (like I was mentioning before about him keeping closed off from deep feelings). But I feel like if I had my health, that I could put even more effort and really be with him.

    The reason I stop calling is usually I just feel guilty for talking about the same depressing stuff over and over to him. I feel like that's not fair to him, and I just feel dumb for it. It's the same stuff over and over. I wish there was more good to say and new things to say. Also, I can't really talk a lot without struggling and feeling bad. It makes my chest hurt even more when I try to talk a lot, and I am "breathy" when I talk. Plus, I hate my speech, like I said. It's harder to understand me, and I feel like I can't say what I really want to say.

    I feel guilty that y'all say I seem so nice. I think that I used to be.... But now, I think I'm mostly just an asshole. I'm always so angry. I've taken it out on my parents and family and friends and everyone. I've said terrible things and lashed out. But honestly, I've grown up in a pretty angry household. My mom has done a lot of that to me while I was growing up. She has said some pretty horrible things to me and been a big negative influence on me for the majority of my life. I don't think she has ever dealt with my situation well. And it seems like she has taken it out on me and other people (but mostly me, because her and I are around each other the most). She has always been the main person to take me places and to take care of me. And with my speech issues and stuff, it has made me more dependent on her, because she knows me as far as my body and speech more than anyone else does. So, it makes me depend on her. But yeah, I think my situation has drove her crazy too.

    But I feel so bad that I'm so angry and upset all of the time. I never wanted to be this person. I know I deal with a lot. But if I died, I don't want to die feeling like this. And a lot of times, it feels like I hate the world a lot. I hate being around people. I'm actually very very terrified about being around people, even my own family and stuff. I have bad social anxiety. I just feel so different and set apart with my situation. And I hate how unfunctional I am. And i hate that I've depended on alcohol for 5 years to help me escape my body. I don't drink 24/7. But I have drank heavily pretty much every weekend for 5 years. Sometimes, I would drink for 2-3 days a week. The past few years, I've gotten to where I'd drink until I pass out or am almost to that point. Just the other day, I had 8-9 shots of vodka mixed with sunny d. It was over a several hour period of time (like probably 7-8 hours), and I did eat a little after drinking several shots. But I still binge drank and got pretty intoxicated. I'm not but 90 lbs. So, it doesn't take a lot anyway. I don't have any pain meds or anything to help stop feeling the weakness or pain with my breathing. I don't know if pain meds are safer than alcohol. Are they?

    But yeah, I just hate it all. I feel like I've sunk so low. It has always been bad, but it just keeps getting worse and worse, and I'm not sure if it can go any lower. Tonight was the typical night, i felt suicidal like crazy and just wanted to die. I just don't have any interests at all in life. It seems like I just don't care about ANYTHING really at all. Usually, people can find shows they life on tv and stuff, but nothing seems to matter to me or give me anything to look forward to in life. Do y'all feel that way?
    Last edited by sweetluvgurl; 06-29-2010 at 04:42 AM.

  10. #430
    Hi Sweetluvgurl... like everyone else that commented on your first post I too have enjoyed reading the two you have posted so far. Very indepth and from the heart. I can see why you thought of journalism . As far as pain meds better then alcohol, I don't think so! Most of my nights are filled with fighting with myself over if I should try to lay down and sleep and know the pain will get much worse or stay up and continue the suffering that I have endured all day. I understand your feelings of suicide and depression. Especially right now. I have been on the hunt for a good pain doc and have not found one yet . So I have been suffering alone since none of my friends or family understand how bad I am hurting. I cry myself to sleep so many nights just to wake up 20 minutes later screaming in agony. The last few weeks have been getting worse and worse as far as depression goes. I try to make myself believe that its all a nightmare and one of these days all of the pain will be a memory but I know that it won't. I think that is what makes the depression worse. Just the knowing that nothing is ever going to get better .

    So here I am just like every other night.....

    (PS. I sometimes copy and paste what I have written just in case the system logs me out before the reply or thread is posted )
    T8-9 according to latest scoring.......
    since 1/3/04

    I am the best at being me. No matter how that happens to be!!

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