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| | From:  rat_lover64 (Original Message) | Sent: 4/18/2008 6:21 AM |
I come on here and I read about everything everyone on here is going through and I feel guilty for ever feeling sorry for myself. Though I'm not sure why. I know that there are people who are worse off than me, but that doesn't mean that RSD doesn't take it's toll on my life. It's taken away so much from me. I never got to really be a child. You can never understand how hard it is to be nine and have your life end, have all your hopes and dreams just disappear. I know I sound over dramatic, but it's how I felt, how I feel. I'm seventeen. I'm not saying that RSD is easy for anyone, but be grateful for the time you had. Because I have to look at my future and know...for the rest of my life I will never be normal. This pain will never go away. This burning horrible pain that is tearing me up inside and it wont go away, and it wont let me rest. I need a break, I want to sleep, I want to be with my friends and be carefree and not have to worry about the little things like what if I get bumped into, will I be able to walk tomorrow if I overdo it today. And how am I going to get all this hw done and study for my test when all I feel like doing is curling up in my bed and not waking up for a long time. I missed two days of school this week because the pain and exhaustion were so bad I just didn't feel the will power to get out of bed. I'm seventeen! It's not fair....I'm supposed to be young and carefree while I can. And I feel stupid because I know that so many of you on here are so much worse off than me, but it doesn't make me feel any better about my own situation. I think I'm just feeling the rain...the stupid rain that has to come in and take away the little will-power I have left. My legs hurt so bad, I pray and I pray and I just want it to disappear but it wont. And I don't know....I guess it just takes alot of strenght to keep holding on to hope, and I just don't feel strong enough. I wish that I had people at school who knew what I was going through, because at least then I wouldn't feel so alone. And I know I'm not...I know that I'm not the only one who's life has been touched by RSD. But when your 17 and no one you know in person can honestly say, "I know what your going through" you just feel so isolated. How many teenagers have to use a wheelchair when they go to the mall because they just can't stand that long? And constanly worrying about the what if's because I know I'll need my energy to get through tomorrow too. I hate feeling so self conscious when I wear shorts in the summer because I just think my legs look so sickly. And then the constant worrying. I don't know if it is rsd in my wrists...but the pain gets worse each day and I begin to wonder if they'll ever feel normal again. Constantly needing help because it seems likmy hands just don't want to work for me anymore. If this is how I feel now, then how will I feel when I'm twenty...thirty...forty? I already feel so old, my mom jokes about how I always sound like an old lady complaining about my aches and pains. I wonder if as I get older if it will only get worse. And then the guestion that always pops into my mind. Who's gonna love someone they can't touch? Who's going to love someone that is only ever going to be a burden...a medical expense. Will I ever be able to realize my dream of being a wife and a mother? With all my problems is it even possible to have a baby? It sometimes feels like more than I can take. Everyone is always telling me that I am so strong...but I don't feel strong. I just feel worn out by life. And there really is nothing anyone can say that will take away my pain...I guess it's just nice to know that someone will read my rant and be able to know what it is I'm feeling. |
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Hello Rat Lover I know how you feel, you feel so misunderstood by people, not to many know what living with RSD is. Believe me every day I wish that I will no wake up or that the pain will go away but I wake up and the pain are still there. The pain are there during the night , I feel bad for you , your are so young but please don't give up. I hope and pray that soon (maybe) there will be a cure for RSD, in the mean time you and everyone living with RSD have to keep hope and faith(including me) I have so many days without hope and I want to give up but I am still here. You will make it ,I don't have a solution but keep on going on, be strong and don't stay by yourself( I do now) I don't know if you have some hobbies , if you don't have any maybe you can find something you would like to do. I know sometimes is hard to get involved with something because of all the pain, don't give up. I will put you in my prayers Daggi122 |
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Child, your messages always make me want to scoop you up and just hug you. What has made you so strong? Have you had close friends or family that have had to overcome illnesses? It doesn't seem fair, I know. My youngest daughter was very ill for several years. She had kidney disease at 15 and began chemo on her 16th birthday. She graduated high school with no hair and a moon face because of a steroid medication. I don't know where she found the strength, but youth may have been the greatest blessing for her, and you and other young women with serious health problems. Your future can be so exciting. I know that each set back you experience now must leave you frustrated and sad and angry. Take heart though, there are more and more advances being made in medicine every day, and rsd is finally starting to get
the well deserved attention it deserves. The light at the end of the tunnel doesn't have to be an oncoming train. Just keep preparing yourself for today and tomorrow and when the time comes for you to decide to marry and have children, you will be so blessed with strength and knowledge, that your children will be blessed as well. Oh, and about the shorts, my guess is that you look much much better than you think you do. Probably beautiful. Did you pick out your dress for prom? There is a wonderful book called "you gotta to keep dancing". It is different than most of the books I have read about overcoming pain and having a wonderful life. I will find the author and let you know.
Struggling to find hope
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| | | From: rat_lover64 |
I come on here and I read about everything everyone on here is going through and I feel guilty for ever feeling sorry for myself. Though I'm not sure why. I know that there are people who are worse off than me, but that doesn't mean that RSD doesn't take it's toll on my life. It's taken away so much from me. I never got to really be a child. You can never understand how hard it is to be nine and have your life end, have all your hopes and dreams just disappear. I know I sound over dramatic, but it's how I felt, how I feel. I'm seventeen. I'm not saying that RSD is easy for anyone, but be grateful for the time you had. Because I have to look at my future and know...for the rest of my life I will never be normal. This pain will never go away. This burning horrible pain that is tearing me up inside and it wont go away, and it wont let me rest. I need a break, I want to sleep, I want to be with my friends and be carefree and not have to worry
about the little things like what if I get bumped into, will I be able to walk tomorrow if I overdo it today. And how am I going to get all this hw done and study for my test when all I feel like doing is curling up in my bed and not waking up for a long time. I missed two days of school this week because the pain and exhaustion were so bad I just didn't feel the will power to get out of bed. I'm seventeen! It's not fair....I'm supposed to be young and carefree while I can. And I feel stupid because I know that so many of you on here are so much worse off than me, but it doesn't make me feel any better about my own situation. I think I'm just feeling the rain...the stupid rain that has to come in and take away the little will-power I have left. My legs hurt so bad, I pray and I pray and I just want it to disappear but it wont. And I don't know....I guess it just takes alot of strenght to keep holding on to hope, and I just don't feel strong enough. I wish that I had
people at school who knew what I was going through, because at least then I wouldn't feel so alone. And I know I'm not...I know that I'm not the only one who's life has been touched by RSD. But when your 17 and no one you know in person can honestly say, "I know what your going through" you just feel so isolated. How many teenagers have to use a wheelchair when they go to the mall because they just can't stand that long? And constanly worrying about the what if's because I know I'll need my energy to get through tomorrow too. I hate feeling so self conscious when I wear shorts in the summer because I just think my legs look so sickly. And then the constant worrying. I don't know if it is rsd in my wrists...but the pain gets worse each day and I begin to wonder if they'll ever feel normal again. Constantly needing help because it seems likmy hands just don't want to work for me anymore. If this is how I feel now, then how will I feel when I'm twenty...thirty...forty? I
already feel so old, my mom jokes about how I always sound like an old lady complaining about my aches and pains. I wonder if as I get older if it will only get worse. And then the guestion that always pops into my mind. Who's gonna love someone they can't touch? Who's going to love someone that is only ever going to be a burden...a medical expense. Will I ever be able to realize my dream of being a wife and a mother? With all my problems is it even possible to have a baby? It sometimes feels like more than I can take. Everyone is always telling me that I am so strong...but I don't feel strong. I just feel worn out by life. And there really is nothing anyone can say that will take away my pain...I guess it's just nice to know that someone will read my rant and be able to know what it is I'm feeling. | |
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I am sadden by your post. Honey, hope and dreams come within you and only you, and that is what you can control. All of us feels sorry for ourselves and why me? I had RSD for 11 years. Yes I have a lot of health issues. I have accepted them and do the best that I can. Friends are few, but I am lucky for the ones I have. I have limited mobility. I only use my wheelchair if I go some place that calls for a lot of walking. If I have a chance to do something and I no it will cause me pain later so be it. It's not like I've never had pain before. It's a compromise. The reason we all feel so helpless is because RSD has so so many unanswered questions and we want to seek answers. That is why a support group is so helpful. Sometimes just talking about it with others like ourselves helps so much because we understand each other. Seek for answers. Have you discussed with your doctor about a spinal cord stimulator or infusion pump? There are many RSD websites like RSD hope, RSDRX,RSD.org They have seminars on RSD, I have been to a few and they were wonderful source of information. Wishing you the best of health.
chris
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Gosh, after seeing your post, I can TOTALLY relate to you. I've gone through so much shit in the past year and a half, that all of the other more way major things I've had to experience before in life and that I've been through all don't matter now.
I'll tell you, that if you are 17 and having this hard of a time dealing with this, one thing that helps me is talking to someone. I actually have 2 psychologists that I go and see. One is just for therapy, and the other is for partial therapy, but he'll prescribe meds for my A.D.D., and if I need it in the future, depression if I change meds from what I'm on now.
To tell you a little bit of what I've been through, just to relate. I spent 13 years working from the age of 14/almost 15. probably about 40 hours/week in the Computer Industry. I've had a hell of alot of opportunities where I've worked at big corporations making good money as I built up through my experience as I dropped out of college a few times after not really knowing what I wanted a degree in as I sucked at math too much to go for computer science and I couldn't program worth a shit either...
So moving on to now, I'm 29 years old now. I feel old as hell, and I Just turned 29 in February. I moved back home when I was 27 in August of 2006. I had previously had a car accident 3 years prior in August of 2003, and that's when all of my chronic pain/RSD started. I had the accident 3 years previously like I said, and was fine after the 9 months of recovery I had to do right after the accident. No pain whatsoever except occasional back pain here and there. I moved home in Aug. of 2006 becuase I had burned out! I'd had it with working 60 hours/week minimum and working everyday of the week including holidays, living in a shitty ghetto ass part of LA, paying upwards of $800/month for a 1 room studio dive apartment with no A/C that worked. I couldn't take it anymore. Basically, I was given the opportunity to move home, go back to college and do what I should have done the first time, and finish a college degree in whatever I desired. So I moved home and enrolled in community college immediately and a few months after that, is when the pain started and my fam. doctor found that I had 3 compression fractures in my back, from the car accident we assume because I didn't do anything to irritate my back to have the compression fractures happen either.
So fast forward to a year later, which was last Oct. and I finally after 11 doctors, tons of appointments, out of pocket expenses, I finally got a diagnosis. Now the fight since the beginning of the pain and since the diagnosis is just to keep the breakthrough pain under control. I have RSD in my back. Basically in the middle right side of my spine up to my neck, and also over into my right shoulder blade and then down my arm ALL THE TIME. It never goes away.
I was running/working out and losing weight when I was hit with the bout of chronic pain/RSD starting when I moved home. I've lost all the muscles in my arms and much of my body becuase I've had to sit around for the last year and a half so I know what you mean.
Talking about missing school???? Oh boy, where do I start. I've been back at college for over 2 years now, and it's taken me 2 terms to finish one term of math 2 times now. I had to drop completely out last fall because I had to go through opiate withdrawal as I wasn't responding to the pain pills/fentynal patches anymore because I had way too high of a tolerance. I started out this term with 4 classes. I dropped down to 2 and I was going to take a late start class to get another course in for this term and I had to drop from that too. So I have been having a hard time just going to school, as well as being able to sit more than 20 minutes in a chair and do my homework. It's one thing to miss class, it's anotehr nwhen you aren't well enough to even do your damn homework!!! So I know what you mean...I have been through a few long term relationships that have left me pretty scarred becuase I've had my heart ripped out and stomped on while giving up everything I had to offer to a relationship that didn't amount to shit each time because the other person wasn't as committed, motivated, or too concerned about what they don't have instead of working through it, and working a job to get ahead. Since my RSD started I've not been remotely interested in a relationship because I've got so much stuff going on with me, and I can't leave the house half the time.. So, I know what you mean.....You really aren't alone! I know your pain very well. And as far as my math class attendance this term. The class is MWF, 3 times/week. Up until the last 2 weeks, since January when the term started, I've only made class 3 times!....It's hard for me to have put 2 years of time into this college and gotten only about a years worth of credit. On top of that I feel like I'm never going to be able to transfer to a 4 year and complete a degree at this pace. I also question what I want to do with myself now that my major also requires the use of my hands and I have so much pain in my right hand that is non carpal tunnell related that it's not funny. I want to major in animation/illustration, but how the F can I draw and use a mouse when I can't even use my hand.....So it's hard to even think about where I'm going in life...On top of that, it's been hard as hell living at home with my parents because it's the first time I've done it since the age of 18. I got out because I couldn't stand being controlled and told what to do....I don't have the ability or the choice anymore as I'm so sick now. I mean you can only ignore it to a certain point...
So my suggestion to you is talk talk TALK. Talk to your friends, talk to your doctors, and go get some therapy going on for yourself. If anything it will help you better deal with your issues such as break through pain, being able to handle yourself when it does happen. It will also feel good to talk about your hopes, dreams, and worries, as well as current issues. I have been totally opposed to it my entire life as I was thrown in family therapy at the age of 9 when my folks split and a few years after and it did NOTHING for me. If you find the right psychologist, I think if you want it to be, therapy, could be very helpfull for you. I mean we can't make it through life on our own regular without RSD, and even with it!. We all need help sometimes, and don't be afraid to ask for it. And remember, it can ALWAYS ALWAYS be much much worse! Everyone may not be able to understand what we go through as RSD patients but EVERYONE has their own hell that they have to deal wiht, and their own problems...so like I said a few times earlier....YOU ARE NOT EVER ALONE!!! I'm always around if you need to talk too, so don't be a stranger...feel free to message me anytime if you need to talk or you have any questions that you think I could help you with....That goes not just for her, but for anyone that may be in a similar situation as myself. That's what this group is for!!!
Good Luck, and take care of yourself...Try to smile once in a while....it's very infectious I hear..... :-) |
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hope after talking yesterday you are doing a little better.Your road is tough but you are very strong.I think you are right in believing that we are this strong as we don't know beter we both got sick in our tweens.I really don't remember my life before I wonder if that makes it easier or harder for us.You post sound just like me in high school except groups like this didn't exist then.I'd like to hope that this group is able to help you if only just a little you are a very detrmined person you can do almost anything look at all you've done in higth school and taking ap classses which is amazing to me. Remember to those who love you,you aren't a burden never think that way.You are a wonderful person . mirage |
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Dearest ratlover,
By the time I was your age my dear, I already had two children. I wanted so badly to be a wife and mother also. I know your heart, wanting and hoping for a tomorrow that your pain will be lessened and gone to live a normal life. I had my first child at 14 and got married. Staying unmarried was unheard of at that time and I did not want to give up my child. I was pushed into marriage to a much older man, those details will stay relatively quiet. Needless to say the marriage was not good, within two years I had been beaten so badly I had suffered 15 broken bones. I had 3 broken bones when my second child was born. I had graduated high school just after my daughter was born and did not even make my high school graduation. That was the last time I was anywhere without my husband. Situations being what they were divorce for me was out of the question so I had to remain where I was or dead, those were my only options.
For the next 7 years I could do nothing right. I was beaten, screamed at, malnourished, locked up, I barely saw my family and had no friends. I then was diagnosed with SLE (Systemic Lupus Erythematosus) and Diabetes. My husband decided I was damaged merchandise because I required medications and medical care. I came from a well to do family and even my money was no good for him to keep me. After several months of him running around on me and using the money to fund his cavorting and not shopping to be feeding his family I became severely ill and landed in intensive care. During the time I was there he sold our property, cleaned out our accounts and took the children and fled the state. He had not worked during our marriage so no money in those accounts was contributed by him. I was released from the hospital to a long term rehabilitation center where I remained for 7 months. I suffered severe trauma from his beatings. I did not know where he had gone and could not find him and was very truly terrified to even look even though he had my children. I then got a job even though I was living in severe pain every day. For the next several years I suffered in this pain, I had been diagnosed with RSD and other medical issues also. I worked part time while living in an assisted living apartment to help with my medical needs. I lived fearfully all these years of this man. A couple of years ago my son came back and found me, when he turned 18. I had not left the town where we had lived just in case my kids wanted to find me. Unfortunately a year ago, a little a year after he found me, my dear son died in an auto accident. Shortly after, my daughter, underaged, ran away from her father and came to live with me. My son's death brought about some issues that began an investigation that led to my husbands arrest and turned the tables to my favor.
My daughter is with me now, we bought a house and my heart is healing. There is love in my heart, and my pain, it's still there but it's not the biggest thing in my life.
My dear child. All the pain and suffering in the world cannot take away the joy of knowing that when you find a loved one, who does love you, for who you are. If you are hurting they will not even notice that they cannot touch you at that moment. They will touch you with their heart. You will find that when you love someone, your pain will allow you to touch, and be touched. You will have good and bad days. Every person does. Someone who loves you for who you are will not judge your condition. If someone judges your condition, they do not love you. Love does not judge, it is patient and kind. Do not be in a rush, do not worry. Find joy in the little things. Don't worry about tomorrow, there is joy enough for today. If you can smile right now then that is what counts. Don't miss a moment, they pass too quickly and you will not get them back. Make every memory you can. If you can't wear the heels....buy them anyway and carry them proudly! Every beautiful woman deserves beautiful shoes! I sit in a wheelchair, do you think I pass on beautiful shoes? Or gorgeous clothing? No way! I have my nails done every other week, my arms are useless but my hands and nails are kept looking pretty.
Keep your spirit, keep your hope. They are closer than ever to finding out something new every day. Keep looking for clinical trials that you may be eligible for. You may be one of the lucky ones to catch a clinical trial of the Cure! Wouldn't that be exciting! Your life is just beginning, don't stop now! Rest, don't worry. Find different ways of studying. If you have to use tapes to hear rather than holding books to read then do it. Solicit all the help you can find, from classmates, teachers, community leaders and associations. Find a spa, and gently speak to them about your condition see if they will offer a cut rate membership, the warmth of the waters flowing will help with the sensitivity. Even the Y pool helps.
Sleep gently and warmly. Relax your thoughts and keep hope in there. Chase away the worry with positive and proud reminders of who you are. Remember, you are not alone!
Hugz, Normalee
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Hi there,,,,,, I feel for yah.. I sure can relate to all that you are feeling. My dear,,,, U r not alone tho. U found us. and we are here to read n know all that you feel. I know there are others worse off than we are. Please know that. I also feel that there is nothing I do mean NOTHING is worse than the pain that we deal with n being misunderstood by the drs. and system. Please know that talking n journaling n talking is best way too keep going n best way too find answers. Five yrs ago, I had really hit my low,, even after accident n being disabled, hubby pulled his stuff on me,,, n got sick n died causing me to loose everything even home and all. Two weeks after burying him, I am moving, wowow,,, talk about the unknown. That was a dark time. Now since moving to Texas, have hit another low with having to move again. This time to get away from family , yet again. Scarey. Really beleive me. It is even more scarey to know that wheelchair is in my future. With being the only girl in family, n being a owner operator n trucker all of my life,, leaving school at age of 15 yrs. n being on my own all that time,,, Learning to ask for help,,, was the hardest thing to learn. Learning that I am not suppose to do what I am normally doing is hard one. But know this::::::::; We change what we can, accept what we cannot change,,, n make things work for us. We cannot change ,,,,, that we cannot change,, not making it on our own without help.. Hell,,, phsycs even have to have physcs help... We are not made to make it on our own.. We were not made that way... And sorry,,, just a fact of life that we have too change. I was also in a very isolated state of being five yrs ago. Sooo very glad that I did have too move. And happier now that I made the move to be closer too family. Sorry that it did not work out to be closer to family.. I cannot change them,,, I sure can keep myself from being like them,,, n being more of a accepting person. And being more understanding n compassionate person. All that we can do n must do. I hope that you feel better. Hoping that we are helping. Glad that you could post this ,,,, n feel that you are cared about my dear. Huggzzz too yah,,,,, lotzzz of hugzzz!!!!!! |
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I feel for you being a kid with RSD. Fortunately for me I was 33 when I was finally diagnoised. Michelle |
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 This is the second time I've read this and..... it breaks my heart. I can't even imagine what you go thru beign a child with this horrible disease. I can identify with everything that your saying but I'm twice your age.... And let me tell you something.... you have every God given right to be angry!!! I was and still am and I probably will be for the rest of my life. Just know that what ever you are going thru YOUR NOT ALONE!!!! As alone as you feel your not alone. You have no right to make yourself feel any worst then you already do, just because your not effected as bad as someone else.... Just be thankful for that. Take Care, Michelle |
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My dear dear Norma,,,,,, gentle hugz!! After reading this post you really really made me realize ,,,,,,,,, how much that I have kept to myself about all that I been thru.. our lives wooww,,,,,, amazing how much we have in common. I did not make it into high school... I was on my own making n supporting myself. Cause of family happenings. Not any fun,,,, sure makes us better people n humans for it all. the pains n hurts that we been thru makes us appreciate life in alot more different ways than people can begin too imagine. I am hoping that the teens n teenagers,,,, everyone that reads this learns that life is there for us,,,,, to enjoy cry n suffer thru.. No matter what we are going thru,,,,,, there are going too be times that will come n make it all worth while...best part,,, over n over again.. Life is a cycle spring summer fall n winter,,, we have too go thru them each year,,,,, so that we can grow n become what we are meant too be n how we are to be.... No matter what.. We all have a purpose!!!!!! Huggzz n luvzzz thanks so much for posting this.. Know that you have a freind my dear rite here.. Annie |
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Annie, what you said was really, nice to hear. Thanks you made me feel better for alittle while. You know what I never looked at that way and I should cause I'm smarter then the way I feel. Thanks, Michelle |
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My dear Michelle,,,, please know that u do have a freind here. No matter what,,,,, I may not be feeling well,,,,, may not be around puter all the time,,,,,, I do respond when I see messages,,,, So please know that u can im me any time... Any one that needs to im me,,, please know that I do answer,,,,,,,, just may take a while. [email protected],,,,, [email protected]. I am a person that no matter what I do stay busy... This week,,, busy packing stuff too hopefully move next week... The puter will be last thing too move out of the house. Transferring everything is going too hard one... My phone is not working.. the happenings with my brother who is landlord,,, is really gotten too last straw... I am not going too take any more from him.. That is that... I am hoping that this works... finances are going to be hard one tho... Take care.. Thanks for letting me know it helps... Annie |
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Hello Rebecca, I think of how old you are and how long your road is going to be, I am 55 this August and got RSD when I was 46. I couldnt imagine how you feel even tho we both have the same disease you are just getting started in life and mine is winding down. I couldnt imagine trying to go to high school the way I feel...you do it! I dont think that many of us here are worse than you are, I think we all know exactly what each other feels and that is what makes this group work! We have here a great form of group therapy. I believe that everyone here cares for you as you do us! You know my daughter Morgan as the two of you have written back and forth since I had her read one of your posts one day. I see how active she is and how easily she can take the wind out of my sails when I try to do things with her...it is then I think about you. You are my daughters age and yet you suffer with the same thing I do, I know it has to be harder for you.....So, you get and extra prayer from Morgan n me!You are a lot stronger than you think. Frank |
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Annie,
Thanks for your kind words. It's nice to know that there is a place where you can go and talk to other people who actually do know what your talking about. We just recently moved as well and that's why I'm not on here as much as I could be right now but that will all change once I get everything put away.
Michelle
--- On Mon, 4/28/08, RSD Helpline Support Group <[email protected]> wrote:
From: RSD Helpline Support Group <[email protected]>
Subject: Re: Struggling to find hope
To: "RSD Helpline Support Group" <[email protected]>
Date: Monday, April 28, 2008, 1:30 PM
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Struggling to find hope
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| From: annie570111 |
My dear Michelle,,,, please know that u do have a freind here. No matter what,,,,, I may not be feeling well,,,,, may not be around puter all the time,,,,,, I do respond when I see messages,,,, So please know that u can im me any time... Any one that needs to im me,,, please know that I do answer,,,,,,,, just may take a while. [email protected],,,,, [email protected]. I am a person that no matter what I do stay busy... This week,,, busy packing stuff too hopefully move next week... The puter will be last thing too move out of the house. Transferring everything is going too hard one... My phone is not working.. the happenings with my brother who is landlord,,, is really gotten too
last straw... I am not going too take any more from him.. That is that... I am hoping that this works... finances are going to be hard one tho... Take care.. Thanks for letting me know it helps... Annie | |
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