Guest guest Posted October 11, 2004 Report Share Posted October 11, 2004 In a message dated 10/11/04 12:13:03 PM Pacific Daylight Time, RSD-CRPSofAmerica writes: hardest thing I had to give up and at first I said my job and my friends there but then I got to thinking and I said the hardest thing was my independence. I can't go shopping, I can't drive myself down to Salem, heck right now I can't even drive to St. Helens and that is only 2 miles away! Hi Lin, you took the words right out of my mouth. RSD had totally robbed me of life as I knew it, I lived on the beach in SW FL, was active played sports and ran my @$$ off at my job as an RN in a hospital. Now I am on disability, have very limited movement, constant pain, memory problems and I have missed 5 years of my life. I could dwell on the past but have learned not to (with the help of lots of psych docs), but still it is hard not to feel cheated. My body has been ravaged by RSD and by the original injury that caused the RSD. I have massive tissue, tendon, cartilage bone, etc., damage and my body is disfigured. I don't mean to sound vain but it is almost like you mourn the affected body parts. My life went from full speed ahead to an abrupt stop. Slowly I am getting back on the path to some sort or recovery. I envy those that say RSD wont; get them down and they keep working, etc., I didn't have that option, I walked into the hospital Oct 28th 1999 and have never walked since, but that's another story........ We all have very different stories but deal with the same issues, pain, loss of independence, feeling a burden to others, loss of income, loss of intimacy due to pain issues. Meds have been a Godsend to me. I basically slept for 2 years after my injury due to multiple surgeries, complications, extended stay in the hospital and in rehab (physical rehab, not drug rehab) and also trying to get the meds so I could at least function enough to go to PT + OT. Things are much better now but still a challenge. Sorry to ramble....................probably putting you to sleep LOL!!!! Take care, Love Jai Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2004 Report Share Posted October 12, 2004 your story sound like ine. i walked into hospital jan, 3, 1993 for a tarsel tunnel release and rode out in wheel chair permaently. never took another step. yes this disease does rob me. for the last three days i have woke up and said oh helll, i am still alive. another day of hell. when i said this to my mom last night she said shut up i do not want to hear that talk. i told her then walk in my shoes. the rsd, lupus, diabetic neurophy a, arthritis and ms attack al at the same time. depression is great and this is my feelings. like it or lump it. she said go do something and stop thinking of your self. i said me??????? this is my problem i do for everyone and never stop for me. so i am tired of fighting she said she will not allow this kind of talk. i told her oh well this is me and my emotions and this is one dam thing you will not take away from me. at this she hung up. so i cried some more. yes rsd does robb me of life. i just hope that maybe today will be a tad better. sorry for being a downer to everyone, but is it a bad time. thanks for caring. cathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2004 Report Share Posted October 12, 2004 Cathy, It is so difficult when people simply do not understand what we try to deal with on a day to day basis. I, too, wake up somedays thinking "Man, I've got to do this AGAIN??" but somehow I always manage. We're always here to listen. We do understand the depression and pain. Hugs, Jo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2004 Report Share Posted October 12, 2004 Cathy - I'm so sorry that your mother responded to you that way. We all need to have our moments to vent. Although I can understand that our physical illness impacts those that love us as well, it can be so painful when their reactions are even occasionally insensitive. I guess that's one of the reasons that it's important to also have resouces outside of of our immediate family for support. When we hit rough patches, we need to know that there is at least somewhere we can go to let our hair down and let it all out. Could it be that this was one of those times that your mom just happened to not be in a supportive space (if she's typically supportive) or maybe she cares deeply for you and is just worried that you will let all of the medical frailities consume you. If she's usually not able to be supportive to you then that's just plain sad and I'm sorry that you can't get what you emotionally need from her. Barbarafishthatsmiles@... wrote: your story sound like ine. i walked into hospital jan, 3, 1993 for atarsel tunnel release and rode out in wheel chair permaently. nevertook another step. yes this disease does rob me. for the last threedays i have woke up and said oh helll, i am still alive. another day ofhell. when i said this to my mom last night she said shut up i do notwant to hear that talk. i told her then walk in my shoes. the rsd,lupus, diabetic neurophy a, arthritis and ms attack al at the same time.depression is great and this is my feelings. like it or lump it. shesaid go do something and stop thinking of your self. i said me???????this is my problem i do for everyone and never stop for me. so i amtired of fighting she said she will not allow this kind of talk. i toldher oh well this is me and my emotions and this is one dam thing youwill not take away from me. at this she hung up. so i cried some more.yes rsd does robb me of life. i just hope that maybe today will be atad better. sorry for being a downer to everyone, but is it a bad time.thanks for caring. cathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2004 Report Share Posted October 12, 2004 > Cathy - I'm so sorry that your mother responded to you that way. We all need to have our moments to vent. Although I can understand that our physical illness impacts those that love us as well, it can be so painful when their reactions are even occasionally insensitive. I guess that's one of the reasons that it's important to also have resouces outside of of our immediate family for support. When we hit rough patches, we need to know that there is at least somewhere we can go to let our hair down and let it all out. Could it be that this was one of those times that your mom just happened to not be in a supportive space (if she's typically supportive) or maybe she cares deeply for you and is just worried that you will let all of the medical frailities consume you. If she's usually not able to be supportive to you then that's just plain sad and I'm sorry that you can't get what you emotionally need from her. Barbara > >Barbara You worded that response so well that I dont think there is need to say more from here but " ditto " Cathy, I'm sorry that she wasnt a support to you when you just needed to voice your feelings. How our family and friends react to our hard core feelings goes a long way towards how we pull ourselves out of the deepest of depressions. Plese Cathy, feel free to come here and vent your frustrations and know that others here will hear you, let you cry, scream, whatever and not think less of you! Gentle hugs Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2004 Report Share Posted October 12, 2004 Cathy, I know it's upsetting when a mom doesn't sound like she is being very supportive...I have been there. But I also know my mom knows I am stubborn and strong most of the time..so when i do get down and complain about it....she wants the strong stubborn side to come out by pushing me..But she doesn't understand how hurtful she can be by doing that when sometimes you just need someone to listen and be supportive. I am glad I have this support group...cause I don't get much support from friends and family..they just don't understand how painful and disabling this can be. They will always compare knee surgery or back pain to what i am going through and it's not even close. Even though I can't possible understand everything you are going through Cathy I can empathize...which everyone in this group can do so much better then someone that has never been through this. Hoping you a "better" day....Hugs..Ginnyfishthatsmiles@... wrote: your story sound like ine. i walked into hospital jan, 3, 1993 for atarsel tunnel release and rode out in wheel chair permaently. nevertook another step. yes this disease does rob me. for the last threedays i have woke up and said oh helll, i am still alive. another day ofhell. when i said this to my mom last night she said shut up i do notwant to hear that talk. i told her then walk in my shoes. the rsd,lupus, diabetic neurophy a, arthritis and ms attack al at the same time.depression is great and this is my feelings. like it or lump it. shesaid go do something and stop thinking of your self. i said me???????this is my problem i do for everyone and never stop for me. so i amtired of fighting she said she will not allow this kind of talk. i toldher oh well this is me and my emotions and this is one dam thing youwill not take away from me. at this she hung up. so i cried some more.yes rsd does robb me of life. i just hope that maybe today will be atad better. sorry for being a downer to everyone, but is it a bad time.thanks for caring. cathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2004 Report Share Posted October 12, 2004 Cathy, I think I am starting to understand more and more about different handicaps! For 22 years I ran around like a crazy person in retail. I loved my job because I always got to meet different people and just enjoyed it. Now recently I can barely walk and I am in pain 24 hours a day. Even the pain killers do not help that much. Just told yesterday that I cannot drive anymore, so what did I do today, I got in the car and drove to the store and to my Moms!!!! I just can't let myself except the fact that I will no longer have the freedom to drive and may go paralyzed! It is a possibility and it really scares me. You never think it is going to happen to you until it does. The only words that I have for you is that if we do not learn to fight for ourselves and this includes how our familys react to our illnesses than what do we have left. I get depressed all the time and really having a bad day today. But I keep telling myself that I need to keep on fighting and I need to win one of these battles. I recieved a phone call today from LTD and again they are giving me a hard time about my MS. They say that my neurologist never said that I actually had MS, but this was back in July when I did not have all the symptoms that I am showing today! She had the nerve to tell me on the phone not to get upset with her and to stay calm. I told her that nothing she says will upset or suprise me, because insurance companys are about making money and not helping the patient and not to worry, but I will get everything straightened out with my doctor and have all the paperwork sent to her! This was just part of my day, so many other things happened it was ridiculous! I have often had problems with my mother believing me in the beginning and we would fight constantly and one of us always hung up on the other, but now she is really starting to read about MS and RSD and is really trying to understand. Our relationship is much better now than it has been in a long time. I also understand that all of this is not easy on her and it has taken its toll. Her doctor suggested that she go to a psychologist and talk about the impact this has put on her life. I know that sometimes I forget what she goes through with me and how she sometimes puts her life on hold to take care of me!!! How many people out there do you think would be willing to do all the things that she does for me! Not many I can tell you that much. I am not trying to say that your Mom does not understand what you go through, but maybe you do not understand what she goes through with you! I know that it took me along, long time to understand how my Mom was feeling and when we were finally able to sit and talk and clear the air, we both got a better understanding on how we each feel! Like I said before we now both have a better understanding on these illnesses and how we each feel about these diseases. It has relieved so much stress for the both of us and we are able to speak to each other with so much more respect that ever before! I hope that I helped you in some way and I am here to talk if you need me. I wish you all the best and maybe I do not understand everything that you are going through right now, but trust me when I tell you that I am here for you and if I can ever help with anything I will. LOL and Best Wishes Always! Dawn Ginny Barrientos wrote: Cathy, I know it's upsetting when a mom doesn't sound like she is being very supportive...I have been there. But I also know my mom knows I am stubborn and strong most of the time..so when i do get down and complain about it....she wants the strong stubborn side to come out by pushing me..But she doesn't understand how hurtful she can be by doing that when sometimes you just need someone to listen and be supportive. I am glad I have this support group...cause I don't get much support from friends and family..they just don't understand how painful and disabling this can be. They will always compare knee surgery or back pain to what i am going through and it's not even close. Even though I can't possible understand everything you are going through Cathy I can empathize...which everyone in this group can do so much better then someone that has never been through this. Hoping you a "better" day....Hugs..Ginnyfishthatsmiles@... wrote: your story sound like ine. i walked into hospital jan, 3, 1993 for atarsel tunnel release and rode out in wheel chair permaently. nevertook another step. yes this disease does rob me. for the last threedays i have woke up and said oh helll, i am still alive. another day ofhell. when i said this to my mom last night she said shut up i do notwant to hear that talk. i told her then walk in my shoes. the rsd,lupus, diabetic neurophy a, arthritis and ms attack al at the same time.depression is great and this is my feelings. like it or lump it. shesaid go do something and stop thinking of your self. i said me???????this is my problem i do for everyone and never stop for me. so i amtired of fighting she said she will not allow this kind of talk. i toldher oh well this is me and my emotions and this is one dam thing youwill not take away from me. at this she hung up. so i cried some more.yes rsd does robb me of life. i just hope that maybe today will be atad better. sorry for being a downer to everyone, but is it a bad time.thanks for caring. cathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2004 Report Share Posted October 16, 2004 Cathy, I can't pretend to know how you feel, you have been dealing with all of this so much longer than I have, and you have not been able to walk where at the moment I'm able to do with my brace, but I know that having mulpltiple issues to deal with just makes everything that much worse. It seems like every time I turn around I've developed another chronic, uncurable disease to take over my body...I don't even know what is causing which pain anymore. My mom is not being supportive at all, I wish I didn't have to work anymore but nobody will help me financially to make this possible. Anyway, I just wanted to let you know that I admire you, for you add so much to the group, are always willing to help someone else and share your experiences, you're always here even when you have so much pain in your own life. I wish I could say something or do something to ease your pain, but I'm here if you ever just want to talk. I hope you are feeling a little better and are having a good weekend. <hugs> Lori Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2004 Report Share Posted October 16, 2004 Cathy, I can't pretend to know how you feel, you have been dealing with all of this so much longer than I have, and you have not been able to walk where at the moment I'm able to do with my brace, but I know that having mulpltiple issues to deal with just makes everything that much worse. It seems like every time I turn around I've developed another chronic, uncurable disease to take over my body...I don't even know what is causing which pain anymore. My mom is not being supportive at all, I wish I didn't have to work anymore but nobody will help me financially to make this possible. Anyway, I just wanted to let you know that I admire you, for you add so much to the group, are always willing to help someone else and share your experiences, you're always here even when you have so much pain in your own life. I wish I could say something or do something to ease your pain, but I'm here if you ever just want to talk. I hope you are feeling a little better and are having a good weekend. <hugs> Lori Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2004 Report Share Posted October 16, 2004 Cathy, I can't pretend to know how you feel, you have been dealing with all of this so much longer than I have, and you have not been able to walk where at the moment I'm able to do with my brace, but I know that having mulpltiple issues to deal with just makes everything that much worse. It seems like every time I turn around I've developed another chronic, uncurable disease to take over my body...I don't even know what is causing which pain anymore. My mom is not being supportive at all, I wish I didn't have to work anymore but nobody will help me financially to make this possible. Anyway, I just wanted to let you know that I admire you, for you add so much to the group, are always willing to help someone else and share your experiences, you're always here even when you have so much pain in your own life. I wish I could say something or do something to ease your pain, but I'm here if you ever just want to talk. I hope you are feeling a little better and are having a good weekend. <hugs> Lori Quote Link to comment Share on other sites More sharing options...
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