RSD and Me

byrd45 Mon Jan 05, 2009 8:04 pm

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From: byrd45 (Original Message) Sent: 7/6/2006 11:22 AM
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From: byrd45 (Original Message) Sent: 6/13/2006 8:46 AM
Hi Everyone,
This week I thought we could talk about something really important to all of us. I'm calling this discussion RSD and Me and what I mean is how have you at this point in time adjusted to having RSD. Whether you have just found out a week ago or found out ten years ago having RSD is a real metamorphasis of our lives. We don't want it to be but it is the nature of RSD to change our lives and how we look at things. I am going to start us off with my experience and would love to hear from as many of you that want to share I think it is helpful to all of us. I look back at the woman who I was before RSD and I still grieve and miss her and probably always will. I spent the first two years of having RSD believing that my life would go back to exactly how it was before I was injured. They honestly were the worst two years of my life. I think a part of me knew I was lying to myself but I wasn't able to admit that things had changed in my life. When the realization hit that my RSD kept spreading and things were getting worse not better my fragile world shattered and I literally fell apart at the seams. I was a mess crying all the time,in pain,feeling real sorry for myself, and I pushed everyone away. I had started to learn the computer out of boredom and decided to surf the net one day and see if they had any support groups for RSD. This was back in 2003 and I was lucky enough to find two. One for chronic pain and another for RSD. I still am a member of the chronic pain group and help co manage it now to help my online friend out whose group it is. This group was a lifeline to me when I needed it and about a year later I decided to open RSD Outreach. RSD has changed my life in so many horrible ways and I don't need to list them because you all know what I am talking about. What I decided was that if I was going to survive this whole thing it wasn't going to happen by concentrating on all the bad things that have happened,or the things I can't do anymore. What I try my best to do and some days are harder than others is to look forward not back and to focus on what I can still do not what I can't do and it helps a little and I feel better for it. There are always days you fall off the horse and get sick of it all and feel fed up and negative but I try not to let that last too long. I know that hurts me in the end and actually makes my pain levels go up as well.So for now RSD and Me co-exist together until the day they find a way to stamp it's little fire out and then I will be first in line!If you would like to comment or discuss RSD and you I would love to hear from you. Just add your comments or experiences to this post.
Love,
Robyn

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From: Littlelizzy2131 Sent: 6/14/2006 3:07 PM
I am happy to write about RSD and me. RSD has changed my life. I worked all my life and raised my daughter by myself. When I crushed my foot in 1978 I was told I would have problems but, I was so happy that I proved them wrong and danced, worked, hiked, etc. Then the arthritis really set in and I had the operation to fix it in 1998. Well, that is when it started, I knew something was wrong and I was always in pain. Then I had to have a surgery to remove one of the screws that the first Dr. had pushing into my nerve. Well, I was still working and taking care of my daughter. I was seeing several Drs. and no one could tell me why I was still in so much pain. Finally when I was diagonsed, the Doctor wrote a report and said I had Complex Regional Pain Syndrome and I thought he was just saying I had problem with pain. I had no idea it was RSD and I didn't even look it up. I continued to work until I couldn't take it anymore and until my daughter was old enough to take care of herself. After I was off work I started making jewelry for a hobby then RSD hit my back. Well, anyway I have had all the blocks, SCS, and every pain med. Now that it has spread everywhere, I have days like all of us that I feel like I can't go on. Also, I am only getting SSI and every month I barely get by and I don't have money to even eat sometimes. I still live alone and I don't think I will ever find a husband that would want to take on my problems. So, I try to take it day by day and hope my pain level will be low for that day and maybe I will be able to get things done. But I will admit that there are days that I hope I don't wake up. I am tired of this!!! I am lonely, I can't pay my bills, and my pain keeps me from doing anything. My life has changed and I don't like it. Knowing that I am not alone and that other people have to live like this helps me because I feel that this is a very lonely disease and people don't want to listen because they don't know what it is. When I say I have RSD they say "What's that?' but, if I said to someone that I have MS or Cancer they would look at me different. I am sorry that I am going on and on but, I am so angry that we have this painful disease that it has changed our lives forever. I would like to thank you again Robyn for letting us have a place to vent.
Lizbeth

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From: EMY2628 Sent: 6/15/2006 1:13 AM
Hi All,
RSD and Me, we don't get along very well together!!! I worked a full time job (4, 10hr days) , and I babysat my two precious grandchildren the other three days a week , plus did all the shopping and most of the house work. Now at least two or three days a week, I usaully stay in bed all day either due to the pain or the exhaustion because I dared to do some normal activity the day before (like go to a freinds house for a few hrs and talk and play board games or take the grandkids to a show or baseball game etc. I can only walk very short distances with my quad cane and I am in an electric wheelchair the rest of the time. I was so happy to get the wheelchair, but now I realize that I pay a price everytime I go out and do something. I am actually sobbing as I right this, because I am so afraid of what lies ahead for me, I am only 45 yrs old and I believe the RSD is spreading (although the docs never really answer that one). The only time I feel good is when the grandchildren are here. they come three days a week , and my husband basically takes care of them for two of the days and I have them on Friday. School will be out next week and I don't know if I can handle watching them all day, because I get so tired, but I would just literally die if I had to say I could not watch them, that would be the end for me. I want answers from these darn doctors about what symptoms are from the RSD and if they are not from that, then what else is wrong??? I really don't know if I will ever come to peace with this situation. Each week at Mass (and in daily prayer) I keep asking God to show me why this happened to me, as I believe everything happens for a reasons and not just by chance.....so far I haven't got an answer, but I am still waiting. I wish I could somehow take this horrible moster away from all of us, but now I know I am talking nonsense. I will however (and currently do) pray daily for all of us who suffer, that somehow a miracle will happen and if the symptoms can not be stopped or reversed, that at least the pain could be taken away. God Bless All of You and Thank You for always being here when I need to talk or ask questions or just complain, I don't know what I would do without this group!
Eileen

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