RSD and Our Family
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byrd45 Mon Jan 05, 2009 8:47 pm
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Recommend Delete Message 25 of 30 in Discussion
From: <NOBR>Liz3079</NOBR> Sent: 11/25/2006 10:05 AM
Hi Robyn
Thanks.Yes,I do have a tendency when I find someone to talk to that I just ramble on and on and on about my rsd. I am still in shock I am not healthy anymore like I used to be and everything causes a lot of pain.Im very very tired all the time.I doubt I get much money since the medical is left open. I see they have a new nurse practitioner close to here,a female who is in orthapedics.A nurse practitioner is much cheaper than a dr. and can prescribe medication .I am going to call her Mon. Maybe I can see her. My attorney wanted me to try to get a job. I asked around at a lot of places I felt I may be able to work but gosh Robyn,there really isnt much to do with just one arm.Most places dont want to hire someone involved with workers comp.I am very very honest so Im not worried about this hearing.God has a hand in all this. I dont understand why I had to get rsd but He knows what He is doing. Its sure slowed me down a lot.I hope Im doing the right thing by settling but thats all my attorney wants to do. Does anyone know if Im entitled to see any correspondence between my lawyer and workers comp?I live in Illinois. Gentle hugs. Liz
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Recommend Delete Message 26 of 30 in Discussion
From: <NOBR>grandmahoney13</NOBR> Sent: 12/1/2006 3:08 PM
Hi everyone. My name is Kathy and my husband has had RSD/CRPS for 17 yrs. I have read some of your letters and can really relate to what you are saying. To say that it hasn't been tough would be lying. I think the worst part for me, besides watching my husband live in pain everyday, was that my kids had to do without alot of things that their friends had because of finances. And they didn't get to do things like play baseball,football,soccer, go on outings, everyday things thatmost people take for granted because we didn't have the extra money and because their dad wasn't able to go. My husband was able to get SSDI after five years, but not being able to work meant that I had to work full-time to be the main support of the family. So I was in a constant frenzy trying to work, take care of things at home and be a mom. I was lucky in the fact that my husband, when he realized that he couldn't support the family anymore, became Mr Mom and made sure that most of the housecleaning and chores were done by either him or the kids. That freed up alot of my time. He also taught the kids to cook dinner, so most of the time dinner was done when I got home from work. But I can tell you right now that if we hadn't loved and respected each other as much as we do, we never would have made it this far. Also, my husband has always stayed very motivated, he realized from early on that he needed to keep moving and not sit still or he would end up in a wheelchair. RSD is like arthritis in alot of ways, you have to keep moving or you stiffen up and then you can't move. It is his motivation that keeps me going. That and my faith. If I didn't have my faith, I don't know. I think that therapy is a very important part of keeping it together. That is one thing that I wish we had more of. We thought we could handle it all ourselves and now looking back over the years (our kids are grown and married) I think it would have been a little easier if we had all been in therapy. The kids and I went for awhile, but couldn't get my husband to go. So, my advice to you all is, get help. Whether is from family members, trained counselors or a caring friend, talk to someone. And let them help you in other ways. Like bringing dinner over some nights, taking the kids for the evening or letting Grandma and Grandpa pay for summer camp for the kids. Thanks for listening.
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Recommend Delete Message 27 of 30 in Discussion
From: <NOBR>Liz3079</NOBR> Sent: 12/1/2006 3:24 PM
Hi Kathy
That was such a nice letter. Did your husband get hurt at work. I am glad you stuck by him and believed him when he said he hurt. You have no idea what it is like for people who have this horrible disease. I know that you sympathize with them and you do believe them but to live with this is the hardest thing Ive ever had to do. I just dont seem to ever get used to it.I realize I have got to get professional help.The pain is unbearable and just trying to make it from day to day is so hard to do anymore,
You are right,you gotta keep moving. You cant just give in to the pain and stop using the rsd limb completely .It will stiffen up.I use my arm and wrist but oh my gosh,it just gets harder and harder to use it. I would love to put it in a sling and never move it again thinking if Im not using it at all it wont hurt so bad.But I cant do that .I gotta keep trying to use it.I am sure rsd spreads. Drs. say it dont but Im sure mine is as I have that burning sensation down the side of my face and through my torso area.Did you husband ever talk about the burning.Both my ears just get on fire if its a little cold out. My left hand is usually gloved even when its not that cold.
You sound like a wonderful person. Thank God I had my kids raised when I got this.Im 57.Its so hard on me. People just dont understand and the majority of the people out there have never heard of rsd.
You take care.
Love and gentle hugs.
Liz
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From: byrd45 Sent: 1/3/2007 11:28 AM
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Recommend Delete Message 28 of 30 in Discussion
From: <NOBR>grandmahoney13</NOBR> Sent: 12/17/2006 3:35 PM
Hi Liz, sorry it has taken me so long to get back to you. I actually answered your message and sent it from my email screen, but I can't see where it made it to the message board. I am still trying to figure out how to navigate on this website. i have not posted on a message board before, so this is all new to me. Please excuse.
My husband and I were in a motor vehicle accident. A drunk driver hit us and that is how my husband got hurt. His left foot was crushed, fractured bones in five places, the cartilage in the rear of his ankle was all gone. Broken left leg. Plus various other injuries. Took them quite a few years before they figured out he had RSD. He has tried almost everything out there over the years to try to reverse it, or just get releif from the pain. Oral narcotics quit working, so now he has a morphine pump. He has had that for over four years now. Basically he has just learned to deal with it.
He says, yes, RSD does spread. He has had that happened quite a few times over the years. It will spread up his leg, sometimes in both legs, both arms and his torso. Then for no reason, it will ease up. Just like for no reason it will flare up when you least expect it. He will go along for weeks with a lower pain level and not feel to bad and then allof a sudden it flares and hes down for a couple of days and when he does feel good enough to get up and move around, he is still in bad shape. And after a couple of weeks , it eases up again. Yes, the pain is burning, sometimes he says he feels like he has a sunburn on the inside. It was really hard on him when we lived in the desert during the summer. It was so hot outside he couldn't hardly stand to go out to get in the car, he said he felt like he was burning up. And he sweated so badly. But then the extreme cold affects him too. Mild climate is the best. We are in MFEMFEMF now, weather here is not the best climate, but he has a great doctor.
Hope you are doing ok today.
Take care,
Kathy
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Recommend Delete Message 29 of 30 in Discussion
From: <NOBR>byrd45</NOBR> Sent: 12/18/2006 9:20 AM
Hi Kathy,
I just wanted to say that your husband is a very lucky man to have you. You sound so much like my husband in how you look at things and I am sure you being by his side is what helps him push through the pain. That's what does it for me all I have to do is look at him or the kids and somehow I can dig deeper even when I feel at the end of my reserves. You described RSD so well in your posts that is exactly how it is with the fluctuations in pain levels. Sometimes extremes in temperature can bring on these attacks alot of us call them flares either hot or cold temperatures.(We did a discussion on that awhile ago if you want to check it out it is on the Past Discussion message board.)That could explain what was going on with the heat and your hubby and it does feel exactly like a sunburn and to me the flu mixed together especially during an attack except no coughing or sneezing lol. You just feel so run down all you can do is get in bed and hope it passes tomorrow or soon.I can see how much you care about your hubby and I just wanted to say hi and let you know I appeciate knowing spouses that are caring like you.It is great hearing from you and if the site gives you to much fuss and you need a hand just email me and I will see you through okay? Keep in touch.
Love,
Robyn
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Recommend Delete Message 30 of 30 in Discussion
From: <NOBR>Cathleen_Mac</NOBR> Sent: 12/28/2006 4:30 AM
Robyn, this is a great subject. I'm impressed by the number of people writing that have supportive family members. I can't join in since my husband is the guy that did this to me.The reality is that some 'get it', but most don't. My hand is clawed, but the 3x4 surgery scars are near my elbow, so they don't get why my biggest problem is 14" away. The reality is also 'why would a guy throw his wife around the house & thru glass, making this happen?' It's hard when people in your life like the guy that did this! Who cares? kick 'em to the curb! Done! It's also hard to find a Dr. that truly understands RSD, so I feel fortunate that I have, thanks to a smart primary doc. I AM thankful that so many of you have supportive family. I think the true reality is that what we go through every day is intense and it's our reality. On the other hand, we can empathize with someone with an impacted tooth, but not really know the pain unless we're feeling it. To me, the biggest effect is that my family doesn't feel it, so unfortunately can't understand it! If someone tells me they have a backache, (even with bad disks in my own) I just don't know their pain. Shoot, I think the worst thing in all of this all is that we just don't FEEL each others pain, so the family that stands by is pretty exceptional! Kiss & Hug the ones that support you.
Recommend Delete Message 25 of 30 in Discussion
From: <NOBR>Liz3079</NOBR> Sent: 11/25/2006 10:05 AM
Hi Robyn
Thanks.Yes,I do have a tendency when I find someone to talk to that I just ramble on and on and on about my rsd. I am still in shock I am not healthy anymore like I used to be and everything causes a lot of pain.Im very very tired all the time.I doubt I get much money since the medical is left open. I see they have a new nurse practitioner close to here,a female who is in orthapedics.A nurse practitioner is much cheaper than a dr. and can prescribe medication .I am going to call her Mon. Maybe I can see her. My attorney wanted me to try to get a job. I asked around at a lot of places I felt I may be able to work but gosh Robyn,there really isnt much to do with just one arm.Most places dont want to hire someone involved with workers comp.I am very very honest so Im not worried about this hearing.God has a hand in all this. I dont understand why I had to get rsd but He knows what He is doing. Its sure slowed me down a lot.I hope Im doing the right thing by settling but thats all my attorney wants to do. Does anyone know if Im entitled to see any correspondence between my lawyer and workers comp?I live in Illinois. Gentle hugs. Liz
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Recommend Delete Message 26 of 30 in Discussion
From: <NOBR>grandmahoney13</NOBR> Sent: 12/1/2006 3:08 PM
Hi everyone. My name is Kathy and my husband has had RSD/CRPS for 17 yrs. I have read some of your letters and can really relate to what you are saying. To say that it hasn't been tough would be lying. I think the worst part for me, besides watching my husband live in pain everyday, was that my kids had to do without alot of things that their friends had because of finances. And they didn't get to do things like play baseball,football,soccer, go on outings, everyday things thatmost people take for granted because we didn't have the extra money and because their dad wasn't able to go. My husband was able to get SSDI after five years, but not being able to work meant that I had to work full-time to be the main support of the family. So I was in a constant frenzy trying to work, take care of things at home and be a mom. I was lucky in the fact that my husband, when he realized that he couldn't support the family anymore, became Mr Mom and made sure that most of the housecleaning and chores were done by either him or the kids. That freed up alot of my time. He also taught the kids to cook dinner, so most of the time dinner was done when I got home from work. But I can tell you right now that if we hadn't loved and respected each other as much as we do, we never would have made it this far. Also, my husband has always stayed very motivated, he realized from early on that he needed to keep moving and not sit still or he would end up in a wheelchair. RSD is like arthritis in alot of ways, you have to keep moving or you stiffen up and then you can't move. It is his motivation that keeps me going. That and my faith. If I didn't have my faith, I don't know. I think that therapy is a very important part of keeping it together. That is one thing that I wish we had more of. We thought we could handle it all ourselves and now looking back over the years (our kids are grown and married) I think it would have been a little easier if we had all been in therapy. The kids and I went for awhile, but couldn't get my husband to go. So, my advice to you all is, get help. Whether is from family members, trained counselors or a caring friend, talk to someone. And let them help you in other ways. Like bringing dinner over some nights, taking the kids for the evening or letting Grandma and Grandpa pay for summer camp for the kids. Thanks for listening.
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Recommend Delete Message 27 of 30 in Discussion
From: <NOBR>Liz3079</NOBR> Sent: 12/1/2006 3:24 PM
Hi Kathy
That was such a nice letter. Did your husband get hurt at work. I am glad you stuck by him and believed him when he said he hurt. You have no idea what it is like for people who have this horrible disease. I know that you sympathize with them and you do believe them but to live with this is the hardest thing Ive ever had to do. I just dont seem to ever get used to it.I realize I have got to get professional help.The pain is unbearable and just trying to make it from day to day is so hard to do anymore,
You are right,you gotta keep moving. You cant just give in to the pain and stop using the rsd limb completely .It will stiffen up.I use my arm and wrist but oh my gosh,it just gets harder and harder to use it. I would love to put it in a sling and never move it again thinking if Im not using it at all it wont hurt so bad.But I cant do that .I gotta keep trying to use it.I am sure rsd spreads. Drs. say it dont but Im sure mine is as I have that burning sensation down the side of my face and through my torso area.Did you husband ever talk about the burning.Both my ears just get on fire if its a little cold out. My left hand is usually gloved even when its not that cold.
You sound like a wonderful person. Thank God I had my kids raised when I got this.Im 57.Its so hard on me. People just dont understand and the majority of the people out there have never heard of rsd.
You take care.
Love and gentle hugs.
Liz
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From: byrd45 Sent: 1/3/2007 11:28 AM
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Recommend Delete Message 28 of 30 in Discussion
From: <NOBR>grandmahoney13</NOBR> Sent: 12/17/2006 3:35 PM
Hi Liz, sorry it has taken me so long to get back to you. I actually answered your message and sent it from my email screen, but I can't see where it made it to the message board. I am still trying to figure out how to navigate on this website. i have not posted on a message board before, so this is all new to me. Please excuse.
My husband and I were in a motor vehicle accident. A drunk driver hit us and that is how my husband got hurt. His left foot was crushed, fractured bones in five places, the cartilage in the rear of his ankle was all gone. Broken left leg. Plus various other injuries. Took them quite a few years before they figured out he had RSD. He has tried almost everything out there over the years to try to reverse it, or just get releif from the pain. Oral narcotics quit working, so now he has a morphine pump. He has had that for over four years now. Basically he has just learned to deal with it.
He says, yes, RSD does spread. He has had that happened quite a few times over the years. It will spread up his leg, sometimes in both legs, both arms and his torso. Then for no reason, it will ease up. Just like for no reason it will flare up when you least expect it. He will go along for weeks with a lower pain level and not feel to bad and then allof a sudden it flares and hes down for a couple of days and when he does feel good enough to get up and move around, he is still in bad shape. And after a couple of weeks , it eases up again. Yes, the pain is burning, sometimes he says he feels like he has a sunburn on the inside. It was really hard on him when we lived in the desert during the summer. It was so hot outside he couldn't hardly stand to go out to get in the car, he said he felt like he was burning up. And he sweated so badly. But then the extreme cold affects him too. Mild climate is the best. We are in MFEMFEMF now, weather here is not the best climate, but he has a great doctor.
Hope you are doing ok today.
Take care,
Kathy
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Recommend Delete Message 29 of 30 in Discussion
From: <NOBR>byrd45</NOBR> Sent: 12/18/2006 9:20 AM
Hi Kathy,
I just wanted to say that your husband is a very lucky man to have you. You sound so much like my husband in how you look at things and I am sure you being by his side is what helps him push through the pain. That's what does it for me all I have to do is look at him or the kids and somehow I can dig deeper even when I feel at the end of my reserves. You described RSD so well in your posts that is exactly how it is with the fluctuations in pain levels. Sometimes extremes in temperature can bring on these attacks alot of us call them flares either hot or cold temperatures.(We did a discussion on that awhile ago if you want to check it out it is on the Past Discussion message board.)That could explain what was going on with the heat and your hubby and it does feel exactly like a sunburn and to me the flu mixed together especially during an attack except no coughing or sneezing lol. You just feel so run down all you can do is get in bed and hope it passes tomorrow or soon.I can see how much you care about your hubby and I just wanted to say hi and let you know I appeciate knowing spouses that are caring like you.It is great hearing from you and if the site gives you to much fuss and you need a hand just email me and I will see you through okay? Keep in touch.
Love,
Robyn
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Recommend Delete Message 30 of 30 in Discussion
From: <NOBR>Cathleen_Mac</NOBR> Sent: 12/28/2006 4:30 AM
Robyn, this is a great subject. I'm impressed by the number of people writing that have supportive family members. I can't join in since my husband is the guy that did this to me.The reality is that some 'get it', but most don't. My hand is clawed, but the 3x4 surgery scars are near my elbow, so they don't get why my biggest problem is 14" away. The reality is also 'why would a guy throw his wife around the house & thru glass, making this happen?' It's hard when people in your life like the guy that did this! Who cares? kick 'em to the curb! Done! It's also hard to find a Dr. that truly understands RSD, so I feel fortunate that I have, thanks to a smart primary doc. I AM thankful that so many of you have supportive family. I think the true reality is that what we go through every day is intense and it's our reality. On the other hand, we can empathize with someone with an impacted tooth, but not really know the pain unless we're feeling it. To me, the biggest effect is that my family doesn't feel it, so unfortunately can't understand it! If someone tells me they have a backache, (even with bad disks in my own) I just don't know their pain. Shoot, I think the worst thing in all of this all is that we just don't FEEL each others pain, so the family that stands by is pretty exceptional! Kiss & Hug the ones that support you.
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continued.......
byrd45 Mon Jan 05, 2009 8:40 pm
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Recommend Delete Message 17 of 24 in Discussion
From: <NOBR>byrd45</NOBR> Sent: 11/20/2006 8:50 AM
Hi Tammy,
I can relate so much to what you were saying. I know exactly what you mean about making dinner and then you are done same here. I am so sick when dinner is done half the time I can hardly eat it. I try though so nobody else feels bad. I'm kind of good at hiding my pain at this point unless it is over a seven then it becomes challenging to hide. I don't want them to have the burden all the time of my suffering and honestly you wouldn't know how much pain I am in unless you really pay attention.My Hubby knows though can't fool him as easy he knows me to well. I just don't want to focus on it either so I try my best not too which is hard as we all know but I try my very best. I remember chasing my boys through the Mcdonaldland tunnels when they were little too thanks for the memory I haven't thought of that in so long. That Robyn is this faint impression to me now that I try to remember but it is so long ago now it seems forever.I just try to be the best mom,wife,and person I can be with this new set of rules by my side. Some days are easier than others.
Love,
Robyn
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Recommend Delete Message 18 of 24 in Discussion
From: <NOBR>byrd45</NOBR> Sent: 11/20/2006 9:05 AM
Hi Lou,
They do that to everyone and I don't blame you for hating them for it. They ruined so many treatments for me by insisting on IME's or that I go on job interviews which was ridiculous when they knew I was to sick to work. You are right they really don't care and they want to frustrate you into giving up so just dig in your heels and no matter how many IME's they send you to go and if the doctor hurts you scream at the top of your lungs. Not all his patients in the waiting room are worker's comp remember that. They don't have the right to hurt you during the exam. You are a human being with feelings and rights and you also have the right to bring someone with you to the exam. I started bringing my husband with after the one IME doctor hurt my arm during an exam by trying to force my arm to move past where it could. I shrieked so loud I really couldn't help it the pain and burning was so horrible. I started crying and yelling at him. That is when the dam burst on my anger towards those IME doctors and I told him off and I saw fear in his eyes too. He knew I wasn't faking itafter the scream I guess and was at least honest enough to put in his report that he felt I had RSD from a work related injury.Not that they are all that honest because they aren't. I got lucky is all that I got one with a conscience. Keep hanging in there and if you ever need an ear I am here for you.
Love,
Robyn
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Recommend Delete Message 19 of 24 in Discussion
From: <NOBR>byrd45</NOBR> Sent: 11/20/2006 9:18 AM
Hi Eileen,
Thanks for sharing your story. It sounds to me that your grandchildren are a source of strength for you.Isn't it amazing what children and grandchildren can do for us just by being in our lives.Them and your faith will get you far. RSD has given me a sense of hope along with all the bad stuff. I had really turned away from my faith before this all happened to me and at first I was angry and blamed god for what happened to me. I wanted someone to blame someone to direct my anger at. Then I realised a couple things. I was still breathing and alive even though I had RSD I still had a life to live here. I figured I could keep being angry at god and myself and the kid who did this or I could let the anger go and live my life for what it is. This has all happened to me for a reason I know that. I don't think it is a punishment either. I'm not really sure exactly yet why my life has taken this direction but I do know a few things. My family needs me and I can be here for them in a way I couldn't before. For me that is a good enough answer for now.That is where things stand and all I know is I am happier ever since I realised these things and stopped blaming god for what happened to me.
Love,
Robyn
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Recommend Delete Message 20 of 24 in Discussion
From: <NOBR>byrd45</NOBR> Sent: 11/20/2006 9:26 AM
Hi Therese,
I have to agree that god doesn't want to see us suffer. I didn't realise that when I first got RSD and was so mad at god and blaming him for everything that had happened to me. Things seemed to fall into place for me when I realised that god didn't ask for this to happen to me so I would be in pain and it really wasn't anyone's fault much less god's that I had RSD. I was hurting and I didn't know how else to handle it I guess but I do know that it helped me to slowly return to a faith that had been lost to me.I find a strength there that helps me to keep going and stay on a positive path.
Love,
Robyn
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From: byrd45 Sent: 11/24/2006 11:03 PM
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Recommend Delete Message 21 of 24 in Discussion
From: <NOBR>byrd45</NOBR> Sent: 11/20/2006 9:31 AM
Hi Rebekah,
Although I am not using Fetanyl I just wanted to say welcome and I hope everything works out well with it. I always look at whatever they are going to give me and research it ask around like you have and then keep an open mind and give it a try. Usually things are just fine and if it has unwanted side effects that you can't live with they can try something else but you just won't know until you try since each of us is so different.Good Luck!
Love,
Robyn
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Recommend Delete Message 22 of 24 in Discussion
From: <NOBR>byrd45</NOBR> Sent: 11/20/2006 9:40 AM
Hi Liz,
I had a thought when I was reading your post about your pension. You could pay a visit to your local senator or congressman and explain the situation. Another option is to look in section of the phonebook that has government listings where I live it is called the blue pages. Where they list all different public service help and they have advocates who all they do is help people who are disabled get access to things such as you are discribing. Tell them that you feel this person is discriminating against you and he is refusing to give you the access you need even though you have asked him many times over the past few months.I'm sure if you try both these options you will start the wheels moving and good luck!
Love,
Robyn
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Recommend Delete Message 23 of 24 in Discussion
From: <NOBR>Liz3079</NOBR> Sent: 11/21/2006 8:48 AM
Hi Robyn
I never thought about calling a local congressman for help.I am not sure what is going on as to why this guy isnt getting my pension started. I am entitled to so many payments till the age of 62 and then it drops to a lower amount .So I need it started in December for sure. I called again yesterday and seen where he returned the call ,I wasnt home .I am sure all he will say is I will put the papers in the mail. I have asked around but there isnt anyone who wants to hire someone almost 60 with a crippled up arm. And I also have corporal tunnel in my right arm so I have a lot of trouble with it hurting too. The left arm is 40 percent disabled. I dont know why my lawyer dont try to get workers comp benefits coming in but he dont. He just tells me I need to find a job I can do. Isnt that ridiculous.I am in so much pain day after day and so tired from it and he just says to find a job I can do. Sounds like he dont know nothing about what I have does he. I called his office yesterday and he says my case is going to be tried in dec.Well,i talked to the secretary not him. She said I will only answer questions he askes and what the arbitrator asks and not allowed to say anything else. This is just ridiculous isnt it.Its just too late to fire this lawyer and besides that,i need the money really bad with no one to help me. my mom has money but dont care if I got a dime or not. I was able to get some food stamps.So that will help out. This is such a nightmare. It just makes you want to crawl in bed and never get out again. I keep thinking if Id quit using this arm it wouldnt hurt so bad. Sometimes my wrist just throbs it hurts so bad. I dont even have a dr. now.My lawyer just dont even care.I think my hearing will be a judgement award kind or something like that.Gentle hugs. Liz I meant to ask you robyn,do you think if that arbitrator allows me to talk I should say more than just answer questions he asks.why does my lawyer not want me to talk to him. this is my crippled up arm,my body and my life at stake. why do you think he dont want me to talk.i think the arbitrator needs to know how miserable i am and how my life has changed since i had this. its not like im lazy,i worked ever since i was out of high school .so ive worked all my life. dont you think i need to put my 2 cents worth in. Whats my lawyer doing,getting some kind of pay off or something for things to go the way workers comp wants.something dont sound right does it?
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Recommend Delete Message 24 of 24 in Discussion
From: <NOBR>byrd45</NOBR> Sent: 11/24/2006 10:54 PM
Hi Liz,
The whole thing does sound kind of weird but I think maybe they just mean keep it short and to the point which is what my lawyer always advises me. I think you should go with your gut instinct at the time you will know what is right when you are there. As for the open medical that means you can be treated by a doctor and they have to pay for it so that is a good thing for you. They won't be able to deny medical treatment for your RSD. Another thing is that later on if you decide you want to for whatever reason you can get another lawyer and settle the medical portion too and you don't have to use this lawyer to do it. That is only if you want to do that. He is actually advising you well to leave that open since RSD can have alot of medical bills involved and they will have to pay for them now. I know the whole thing has you very stressed out and I hope they get you enough money to help you with your financial situation. I will keep my fingers crossed and as always you are in my prayers.
Love,
Robyn
Recommend Delete Message 17 of 24 in Discussion
From: <NOBR>byrd45</NOBR> Sent: 11/20/2006 8:50 AM
Hi Tammy,
I can relate so much to what you were saying. I know exactly what you mean about making dinner and then you are done same here. I am so sick when dinner is done half the time I can hardly eat it. I try though so nobody else feels bad. I'm kind of good at hiding my pain at this point unless it is over a seven then it becomes challenging to hide. I don't want them to have the burden all the time of my suffering and honestly you wouldn't know how much pain I am in unless you really pay attention.My Hubby knows though can't fool him as easy he knows me to well. I just don't want to focus on it either so I try my best not too which is hard as we all know but I try my very best. I remember chasing my boys through the Mcdonaldland tunnels when they were little too thanks for the memory I haven't thought of that in so long. That Robyn is this faint impression to me now that I try to remember but it is so long ago now it seems forever.I just try to be the best mom,wife,and person I can be with this new set of rules by my side. Some days are easier than others.
Love,
Robyn
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Recommend Delete Message 18 of 24 in Discussion
From: <NOBR>byrd45</NOBR> Sent: 11/20/2006 9:05 AM
Hi Lou,
They do that to everyone and I don't blame you for hating them for it. They ruined so many treatments for me by insisting on IME's or that I go on job interviews which was ridiculous when they knew I was to sick to work. You are right they really don't care and they want to frustrate you into giving up so just dig in your heels and no matter how many IME's they send you to go and if the doctor hurts you scream at the top of your lungs. Not all his patients in the waiting room are worker's comp remember that. They don't have the right to hurt you during the exam. You are a human being with feelings and rights and you also have the right to bring someone with you to the exam. I started bringing my husband with after the one IME doctor hurt my arm during an exam by trying to force my arm to move past where it could. I shrieked so loud I really couldn't help it the pain and burning was so horrible. I started crying and yelling at him. That is when the dam burst on my anger towards those IME doctors and I told him off and I saw fear in his eyes too. He knew I wasn't faking itafter the scream I guess and was at least honest enough to put in his report that he felt I had RSD from a work related injury.Not that they are all that honest because they aren't. I got lucky is all that I got one with a conscience. Keep hanging in there and if you ever need an ear I am here for you.
Love,
Robyn
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Recommend Delete Message 19 of 24 in Discussion
From: <NOBR>byrd45</NOBR> Sent: 11/20/2006 9:18 AM
Hi Eileen,
Thanks for sharing your story. It sounds to me that your grandchildren are a source of strength for you.Isn't it amazing what children and grandchildren can do for us just by being in our lives.Them and your faith will get you far. RSD has given me a sense of hope along with all the bad stuff. I had really turned away from my faith before this all happened to me and at first I was angry and blamed god for what happened to me. I wanted someone to blame someone to direct my anger at. Then I realised a couple things. I was still breathing and alive even though I had RSD I still had a life to live here. I figured I could keep being angry at god and myself and the kid who did this or I could let the anger go and live my life for what it is. This has all happened to me for a reason I know that. I don't think it is a punishment either. I'm not really sure exactly yet why my life has taken this direction but I do know a few things. My family needs me and I can be here for them in a way I couldn't before. For me that is a good enough answer for now.That is where things stand and all I know is I am happier ever since I realised these things and stopped blaming god for what happened to me.
Love,
Robyn
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Recommend Delete Message 20 of 24 in Discussion
From: <NOBR>byrd45</NOBR> Sent: 11/20/2006 9:26 AM
Hi Therese,
I have to agree that god doesn't want to see us suffer. I didn't realise that when I first got RSD and was so mad at god and blaming him for everything that had happened to me. Things seemed to fall into place for me when I realised that god didn't ask for this to happen to me so I would be in pain and it really wasn't anyone's fault much less god's that I had RSD. I was hurting and I didn't know how else to handle it I guess but I do know that it helped me to slowly return to a faith that had been lost to me.I find a strength there that helps me to keep going and stay on a positive path.
Love,
Robyn
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Recommend Delete Message 3 of 3 in Discussion
From: byrd45 Sent: 11/24/2006 11:03 PM
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Recommend Delete Message 21 of 24 in Discussion
From: <NOBR>byrd45</NOBR> Sent: 11/20/2006 9:31 AM
Hi Rebekah,
Although I am not using Fetanyl I just wanted to say welcome and I hope everything works out well with it. I always look at whatever they are going to give me and research it ask around like you have and then keep an open mind and give it a try. Usually things are just fine and if it has unwanted side effects that you can't live with they can try something else but you just won't know until you try since each of us is so different.Good Luck!
Love,
Robyn
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Recommend Delete Message 22 of 24 in Discussion
From: <NOBR>byrd45</NOBR> Sent: 11/20/2006 9:40 AM
Hi Liz,
I had a thought when I was reading your post about your pension. You could pay a visit to your local senator or congressman and explain the situation. Another option is to look in section of the phonebook that has government listings where I live it is called the blue pages. Where they list all different public service help and they have advocates who all they do is help people who are disabled get access to things such as you are discribing. Tell them that you feel this person is discriminating against you and he is refusing to give you the access you need even though you have asked him many times over the past few months.I'm sure if you try both these options you will start the wheels moving and good luck!
Love,
Robyn
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Recommend Delete Message 23 of 24 in Discussion
From: <NOBR>Liz3079</NOBR> Sent: 11/21/2006 8:48 AM
Hi Robyn
I never thought about calling a local congressman for help.I am not sure what is going on as to why this guy isnt getting my pension started. I am entitled to so many payments till the age of 62 and then it drops to a lower amount .So I need it started in December for sure. I called again yesterday and seen where he returned the call ,I wasnt home .I am sure all he will say is I will put the papers in the mail. I have asked around but there isnt anyone who wants to hire someone almost 60 with a crippled up arm. And I also have corporal tunnel in my right arm so I have a lot of trouble with it hurting too. The left arm is 40 percent disabled. I dont know why my lawyer dont try to get workers comp benefits coming in but he dont. He just tells me I need to find a job I can do. Isnt that ridiculous.I am in so much pain day after day and so tired from it and he just says to find a job I can do. Sounds like he dont know nothing about what I have does he. I called his office yesterday and he says my case is going to be tried in dec.Well,i talked to the secretary not him. She said I will only answer questions he askes and what the arbitrator asks and not allowed to say anything else. This is just ridiculous isnt it.Its just too late to fire this lawyer and besides that,i need the money really bad with no one to help me. my mom has money but dont care if I got a dime or not. I was able to get some food stamps.So that will help out. This is such a nightmare. It just makes you want to crawl in bed and never get out again. I keep thinking if Id quit using this arm it wouldnt hurt so bad. Sometimes my wrist just throbs it hurts so bad. I dont even have a dr. now.My lawyer just dont even care.I think my hearing will be a judgement award kind or something like that.Gentle hugs. Liz I meant to ask you robyn,do you think if that arbitrator allows me to talk I should say more than just answer questions he asks.why does my lawyer not want me to talk to him. this is my crippled up arm,my body and my life at stake. why do you think he dont want me to talk.i think the arbitrator needs to know how miserable i am and how my life has changed since i had this. its not like im lazy,i worked ever since i was out of high school .so ive worked all my life. dont you think i need to put my 2 cents worth in. Whats my lawyer doing,getting some kind of pay off or something for things to go the way workers comp wants.something dont sound right does it?
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Recommend Delete Message 24 of 24 in Discussion
From: <NOBR>byrd45</NOBR> Sent: 11/24/2006 10:54 PM
Hi Liz,
The whole thing does sound kind of weird but I think maybe they just mean keep it short and to the point which is what my lawyer always advises me. I think you should go with your gut instinct at the time you will know what is right when you are there. As for the open medical that means you can be treated by a doctor and they have to pay for it so that is a good thing for you. They won't be able to deny medical treatment for your RSD. Another thing is that later on if you decide you want to for whatever reason you can get another lawyer and settle the medical portion too and you don't have to use this lawyer to do it. That is only if you want to do that. He is actually advising you well to leave that open since RSD can have alot of medical bills involved and they will have to pay for them now. I know the whole thing has you very stressed out and I hope they get you enough money to help you with your financial situation. I will keep my fingers crossed and as always you are in my prayers.
Love,
Robyn
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RSD and Our Family
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From: byrd45 (Original Message) Sent: 11/24/2006 10:59 PM
Hi Everyone,
This week I thought we could talk about how RSD has impacted us and our families. To me aside from the unrelenting pain, what RSD does to families, is the hardest thing to bear about this disease. We each have our tales to tell and if you feel comfortable I would like you to share yours. I know this is an upsetting subject for all of us but hopefully by sharing with each other it will help take some burden off of us. RSD has changed my family in so many ways but thankfully one thing we have held onto fiercely is our ability to laugh even in the worst of times. If it wasn't for that I don't think I would be able to keep going the way I do.I am thankful to them for standing behind me I know alot of people haven't been so lucky. I see frustration and confusion in there faces everyday they aren't mad at me they are angry as he-l at this horrible disease RSD.They want to make it go away and they can't. They watch me in pain everyday and there isn't a thing they can do to make it go away. We all hope for a cure everyday and go through our new life where mom isn't the same mom as she used to be. My kids have to help alot more and so does my husband or certain chores won't get done because I am not able to do them anymore. That still frustrates me even after five years. I know they miss the old me and I miss her too! Somedays I wish things could be different it is natural to think that way. I forget things right after they tell me and am much more sensitive then I ever was and sometimes break into tears when it all becomes to much. Those are the worse times but that isn't all times. I push past my pain and reach for everything I can take from every day. I wake up at 5:00 every morning and see my kids off to school and my husband off to work. This is something I can still give even on the worse days I force myself. Bad days I lay back down other days I do things to run group for awhile and then do what I am still able to do around the house. I take alot of breaks so it takes alot longer than before I was sick but I still get it done so it makes me feel I am accomplishing something for my family.I feel lucky that they accept me for who I am and know I am trying the best I can in a hard situation. I didn't have the same luck with some friends but that is another discussion all together.This has affected my husband he lost a part of me that day which is hard to replace but luckily our relationship has weathered this storm. We are all in therapy which does help. Matt as alot of you know had problems with the law and spent time in a home for troubled youths but thankfully is home now. I think my illness had a small part in that mixed with him being bipolar was a lethal combination. I thank god everyday that he is better now and home and doing well again. Joe has depression problems which have affected school. Even though he is very smart he is failing two courses because he is so depressed it is affecting his schoolwork.I'm standing behind him and helping him the best I can and hoping things will even out for him also.Through it all I pray alot for tomorrow to be a little better and to help me keep reaching for that light that I know is just beyond my reach.I know that each day brings promises of joy even in the worst of times and that is what I hold onto and it sees me through. If you would like to share how RSD how affected you and your family just add your experience to this post.As always I would love to hear from you!
Love,
Robyn
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From: <NOBR>EMY2628</NOBR> Sent: 11/18/2006 12:21 AM
HI NANNY250,
I WEAR A FENTANYL PATCH AT ALL TIMES AND I USE PERCOCET AT LEAST THREE TIMES A DAY FOR BREAKTHROUGH PAIN, IN ADDITION TO THE NEURONTIN, CLONAZEPAM, SOMA, DAYPRO, AND TIZANADINE.
THE FENYANYL TAKES A LITTLE WHILE TO ADJUST TO, AT FIRST I WOULD NOT RECCOMEND DRIVING, BUT AFTER A WHILE YOU CAN PRETTY MUCH DO ANY ACTIVITIES THAT YOU USED TO DO, THIS OF COURSE IS ON AN INDIVIDUAL BASIS. BUT FROM OTHER PEOPLE I KNOW WHO TAKE IT, THEY HAD AN ADJUSTMENT PERIOD JUST AS I DID AND NOW THEIR SYSTEMS ARE USED TO IT.
IT WORKD PRETTY WELL FOR THE PAIN, I LIKE IT MUCH BETTER THEN THE OXYCONTIN I WAS ON PRIOR TO THIS. THE FENTANYL SEEMS TO KEEP A CONSTANT STREAM OF THE MED IN YOUR BODY WERE AS THE OXYCONTIN WOULD TIME RELEASE AND I WOULD GET HIT WITH AN OVERWHELMING DOSE, WHEN I WAS LEAST EXPECTING IT (LIKE WHEN I WAS DRIVING). I HAVE FOUND THE FENTANYL TO BE A MUCH BETTER "CONSTANT" PAIN RELIEVER THEN SOME OF THE OTHER OPTIONS OUT THERE.
IF THERE IS ANYTHING ELSE I CAN ANSWER FOR YOU, FEEL FREE TO ASK. TAKE CARE AND GOD BLESS.
EILEEN
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Recommend Delete Message 11 of 24 in Discussion
From: <NOBR>therese521</NOBR> Sent: 11/18/2006 12:53 AM
Liz,
One big consolation that we do have is this group. NO two people with
RSD have the exact same symptoms, but we certainly do know, in general,
what each other is going through, even if no one else ever understands.
I literally thank God every night for Robyn and what she's done for all
of us here. Sometimes I think that she just thinks that she brings us
together to talk, but she does so much more for us.
Please forgive me if I don't remember your situation with your
particular view of Faith with RSD. I'm sure you've seen by now, that my
Catholic Faith and beliefs have held me up through all of this. Thank
God (literally!) He has given me the BEST husband, who has been so
supportive, understanding, patient, gentle, and so much more. But we
both know that we couldn't have gotten through any of this (through the
past 12 years) if it wasn't for God. I certainly went through all of the
stages (even though I've been brought up with very devout strong
Catholic parents) of "why is God doing this to me"; if He loves me so
much why would He make me hurt so bad; why when I do all of the things
that I'm supposed to (go to church, Pray, etc) did I get this.....etc.
But finally after 12 years; many Prayers; and a few VERY special people
who entered my life (Priests, Joe, and some wonderful Faithful friends),
I'm coming to some kind of understanding of why this is happening.
As Catholics we believe that Christ died on the Cross for us. We believe
that when we suffer, we are suffering WITH Christ and are grateful that
we can do that, and therefore take away some of His pain (literally His
pain, or other pains of others on earth - physical, Spiritual etc). A
very good friend of ours who is a Priest, when I first met him and told
him my situation said "you are very lucky" (which has been the sentiment
of many Catholics I know). They said this, then explained to me that by
giving suffering I'm actually able to have pain and say "please God with
this pain, take away the pain of ...(someone we know who is suffering;
world problems; innocent people who I don't even know who are going
through tragic things, etc)". With this we truly believe through our
Faith we really are helping Christ to help others in this world. For
example, my Mother-in-Law has been in the Hospital for the past two
weeks and is going through a very difficult time. She's had an ostomy
for years and has had a lot of problems with it recently. She ended up
having two MAJOR surgeries while she's been in there, and has been
through a LOT of pain.The other day I was having a very painful day. I
cried a little. Then stopped, and Prayed, and asked God to keep giving
me that pain, or make it worse if necessary, but with that, to take some
of her pain away.
My Faith really is the glue that has kept me together through all of
this. Thank God that Joe and I have always known that it's not just two
of us in this Marriage, but three, because God is there too. And with
that He's helped us through this. Please don't get me wrong. That does
not mean that we haven't gone through some very difficult times
(financially, emotionally), but the stronger our Faith became along with
the RSD, the better things became. Not always because we were "given"
things or money, but because we learned through those hard times, and
came to know the important things in life.
I'm sorry, I didn't mean to "babble". You just sounded "down", and I can
honestly tell you that if you hold on to God, He WILL help. I don't know
if you ever heard of EWTN. It's a Catholic Network that has Mass on
every day, and is a wonderful way to see God's word. They often talk
about suffering WITH Christ. It HAS made a huge difference to me, and I
suggest that you try to use God through this. He WANTS us to ask for His
help. He wants to help us, He does not want to see us suffer.
I hope I helped build you up a little. If there's ANYTHING I can do to
help direct you toward God if you need it, please don't hesitate to ask.
Love,
Therese
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Recommend Delete Message 12 of 24 in Discussion
From: <NOBR>Liz3079</NOBR> Sent: 11/18/2006 8:30 AM
Hi Theresa
Thanks for the nice letter.I do believe in God and my belief in Him is very strong. I have seen God do so many wondrous things.And answer many prayers.Things are falling into place little by little and I know God has a hand in all of it. If I hadnt believed in God then by now I would have committed suicide because this is so hard to deal with.But I am a very strong person and have been through so much in my life. This is just another trial and tribulation God is testing me with. Its just the daily pain.And this is a workers comp case and they dont make anything easy for you.Actually I dont think they even really care or believe me. I would never lie or fake anything. The pain makes me so tired though. I dont have anyone supportive ,no husband,mom doesnt care and my boys dont really understand.They are older though.Im just glad if i was going to get this I got it after the kids were grown.It doesnt matter how much I am put through,I still believe in God,its just Im drained from this constant daily pain.It makes me so sick.I will be ok because I am so tough and because I know there is a tomorrow. Things are all for reasons,no matter what happens in a persons life.I have never felt God was punishing me,I have always been a good person,very kindhearted and would help anyone out if I could. I think mostly the devil is trying to break me down,but he cant do it.God gets me through each day.The cold has really made me miserable.I worry about the money situation. Im trying to get a pension started but the fella handling the pensions just dont seem to care. I have to correspond by phone and everytime I call he just says I will put the papers in the mail today and that was 2 months ago.Everytime I call its the same thing.This is my money I have earned for working all my life and I deserve it and want it started.Hes way too far away to drive to.I get really scared as I dont want to lose everything I have because he dont seem to want to get on the ball and get this money coming in for me. I just dont know what else to do but just keep calling.I dont feel like getting out and working in all this horrible pain.I cant even think straight anymore.You take care.Gentle hugs. Liz
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Recommend Delete Message 13 of 24 in Discussion
From: <NOBR>nanny250</NOBR> Sent: 11/18/2006 2:38 PM
Hello, Did the patch make you feell different. I'm really nervous taking it. The doctor told me to ask my support group, people who have taken it and know what it feels like. Does it make you sleepy, speedy, loopy, or out of control? Please write back. I'm only 25 and I hate this, I can bearly funtion in my everyday life and have not met one person other than me that suffers from this errible disease.
Rebekah
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Recommend Delete Message 14 of 24 in Discussion
From: <NOBR>therese521</NOBR> Sent: 11/18/2006 4:36 PM
Eileen,
That's funny. Reading your e-mail was as if I was reading what I wrote
myself! I feel the EXACT same way about the Fentanyl patch and the
oxycontin.
Hope that helps Nanny.
Love,
Therese
Reply
Recommend Delete Message 15 of 24 in Discussion
From: <NOBR>Liz3079</NOBR> Sent: 11/19/2006 10:58 AM
Hi Nanny
I am sorry you have rsd.You are so young. When I was diagnosed with it I had never heard of it neither but I am a tough person and I was so sure Id beat it,whatever it was .I read up on it but kept saying there is no way I will end up like some of the people who had it.But that was over 2 years ago and I still have it. Having a support group to turn to really helps a lot to make it through really bad days when you are so depressed.The people who also have it are the only ones who really understand what its like and how it affects us. I am glad I can come here to post .It helps me keep my sanity.Gentle hugs. Liz
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From: byrd45 Sent: 11/24/2006 11:02 PM
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Recommend Delete Message 16 of 24 in Discussion
From: <NOBR>byrd45</NOBR> Sent: 11/20/2006 8:35 AM
Hi Kevin,
I am so glad your daughter called when she did! I think we all have thoughts like you have at least in one respect or another. I'm glad you didn't do it though and won't go there again. It's understandable getting to that point and I know I have been pushed that far once myself it isn't a happy memory for me either. I was so depressed and tired of the pain that I was plotting ways I could kill myself. I know that sounds horrible,but that is how far pain can push you if you aren't careful. I have my priorities all in line now and would never ever consider that now and can't even believe I did once but I did. I think alot of us have been pushed farther than we would like because of RSD. I was so depressed back then and didn't realise it but one of the meds I was taking was causing additional depression and suicidal thoughts. When we finally realised what was going on and I was weaned off the medicine I started seeing things clearer.All I have to do now is look at my husband and my two sons and I know that I can stand any pain if it means I can be here for them. I would have destroyed their lives if I had done that and I am so thankful I didn't. Sometimes I feel like life tests us but we just have to put our claws out and hang on for the ride no matter what.
Love,
Robyn
Recommend Delete Message 1 of 3 in Discussion
From: byrd45 (Original Message) Sent: 11/24/2006 10:59 PM
Hi Everyone,
This week I thought we could talk about how RSD has impacted us and our families. To me aside from the unrelenting pain, what RSD does to families, is the hardest thing to bear about this disease. We each have our tales to tell and if you feel comfortable I would like you to share yours. I know this is an upsetting subject for all of us but hopefully by sharing with each other it will help take some burden off of us. RSD has changed my family in so many ways but thankfully one thing we have held onto fiercely is our ability to laugh even in the worst of times. If it wasn't for that I don't think I would be able to keep going the way I do.I am thankful to them for standing behind me I know alot of people haven't been so lucky. I see frustration and confusion in there faces everyday they aren't mad at me they are angry as he-l at this horrible disease RSD.They want to make it go away and they can't. They watch me in pain everyday and there isn't a thing they can do to make it go away. We all hope for a cure everyday and go through our new life where mom isn't the same mom as she used to be. My kids have to help alot more and so does my husband or certain chores won't get done because I am not able to do them anymore. That still frustrates me even after five years. I know they miss the old me and I miss her too! Somedays I wish things could be different it is natural to think that way. I forget things right after they tell me and am much more sensitive then I ever was and sometimes break into tears when it all becomes to much. Those are the worse times but that isn't all times. I push past my pain and reach for everything I can take from every day. I wake up at 5:00 every morning and see my kids off to school and my husband off to work. This is something I can still give even on the worse days I force myself. Bad days I lay back down other days I do things to run group for awhile and then do what I am still able to do around the house. I take alot of breaks so it takes alot longer than before I was sick but I still get it done so it makes me feel I am accomplishing something for my family.I feel lucky that they accept me for who I am and know I am trying the best I can in a hard situation. I didn't have the same luck with some friends but that is another discussion all together.This has affected my husband he lost a part of me that day which is hard to replace but luckily our relationship has weathered this storm. We are all in therapy which does help. Matt as alot of you know had problems with the law and spent time in a home for troubled youths but thankfully is home now. I think my illness had a small part in that mixed with him being bipolar was a lethal combination. I thank god everyday that he is better now and home and doing well again. Joe has depression problems which have affected school. Even though he is very smart he is failing two courses because he is so depressed it is affecting his schoolwork.I'm standing behind him and helping him the best I can and hoping things will even out for him also.Through it all I pray alot for tomorrow to be a little better and to help me keep reaching for that light that I know is just beyond my reach.I know that each day brings promises of joy even in the worst of times and that is what I hold onto and it sees me through. If you would like to share how RSD how affected you and your family just add your experience to this post.As always I would love to hear from you!
Love,
Robyn
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From: <NOBR>EMY2628</NOBR> Sent: 11/18/2006 12:21 AM
HI NANNY250,
I WEAR A FENTANYL PATCH AT ALL TIMES AND I USE PERCOCET AT LEAST THREE TIMES A DAY FOR BREAKTHROUGH PAIN, IN ADDITION TO THE NEURONTIN, CLONAZEPAM, SOMA, DAYPRO, AND TIZANADINE.
THE FENYANYL TAKES A LITTLE WHILE TO ADJUST TO, AT FIRST I WOULD NOT RECCOMEND DRIVING, BUT AFTER A WHILE YOU CAN PRETTY MUCH DO ANY ACTIVITIES THAT YOU USED TO DO, THIS OF COURSE IS ON AN INDIVIDUAL BASIS. BUT FROM OTHER PEOPLE I KNOW WHO TAKE IT, THEY HAD AN ADJUSTMENT PERIOD JUST AS I DID AND NOW THEIR SYSTEMS ARE USED TO IT.
IT WORKD PRETTY WELL FOR THE PAIN, I LIKE IT MUCH BETTER THEN THE OXYCONTIN I WAS ON PRIOR TO THIS. THE FENTANYL SEEMS TO KEEP A CONSTANT STREAM OF THE MED IN YOUR BODY WERE AS THE OXYCONTIN WOULD TIME RELEASE AND I WOULD GET HIT WITH AN OVERWHELMING DOSE, WHEN I WAS LEAST EXPECTING IT (LIKE WHEN I WAS DRIVING). I HAVE FOUND THE FENTANYL TO BE A MUCH BETTER "CONSTANT" PAIN RELIEVER THEN SOME OF THE OTHER OPTIONS OUT THERE.
IF THERE IS ANYTHING ELSE I CAN ANSWER FOR YOU, FEEL FREE TO ASK. TAKE CARE AND GOD BLESS.
EILEEN
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Recommend Delete Message 11 of 24 in Discussion
From: <NOBR>therese521</NOBR> Sent: 11/18/2006 12:53 AM
Liz,
One big consolation that we do have is this group. NO two people with
RSD have the exact same symptoms, but we certainly do know, in general,
what each other is going through, even if no one else ever understands.
I literally thank God every night for Robyn and what she's done for all
of us here. Sometimes I think that she just thinks that she brings us
together to talk, but she does so much more for us.
Please forgive me if I don't remember your situation with your
particular view of Faith with RSD. I'm sure you've seen by now, that my
Catholic Faith and beliefs have held me up through all of this. Thank
God (literally!) He has given me the BEST husband, who has been so
supportive, understanding, patient, gentle, and so much more. But we
both know that we couldn't have gotten through any of this (through the
past 12 years) if it wasn't for God. I certainly went through all of the
stages (even though I've been brought up with very devout strong
Catholic parents) of "why is God doing this to me"; if He loves me so
much why would He make me hurt so bad; why when I do all of the things
that I'm supposed to (go to church, Pray, etc) did I get this.....etc.
But finally after 12 years; many Prayers; and a few VERY special people
who entered my life (Priests, Joe, and some wonderful Faithful friends),
I'm coming to some kind of understanding of why this is happening.
As Catholics we believe that Christ died on the Cross for us. We believe
that when we suffer, we are suffering WITH Christ and are grateful that
we can do that, and therefore take away some of His pain (literally His
pain, or other pains of others on earth - physical, Spiritual etc). A
very good friend of ours who is a Priest, when I first met him and told
him my situation said "you are very lucky" (which has been the sentiment
of many Catholics I know). They said this, then explained to me that by
giving suffering I'm actually able to have pain and say "please God with
this pain, take away the pain of ...(someone we know who is suffering;
world problems; innocent people who I don't even know who are going
through tragic things, etc)". With this we truly believe through our
Faith we really are helping Christ to help others in this world. For
example, my Mother-in-Law has been in the Hospital for the past two
weeks and is going through a very difficult time. She's had an ostomy
for years and has had a lot of problems with it recently. She ended up
having two MAJOR surgeries while she's been in there, and has been
through a LOT of pain.The other day I was having a very painful day. I
cried a little. Then stopped, and Prayed, and asked God to keep giving
me that pain, or make it worse if necessary, but with that, to take some
of her pain away.
My Faith really is the glue that has kept me together through all of
this. Thank God that Joe and I have always known that it's not just two
of us in this Marriage, but three, because God is there too. And with
that He's helped us through this. Please don't get me wrong. That does
not mean that we haven't gone through some very difficult times
(financially, emotionally), but the stronger our Faith became along with
the RSD, the better things became. Not always because we were "given"
things or money, but because we learned through those hard times, and
came to know the important things in life.
I'm sorry, I didn't mean to "babble". You just sounded "down", and I can
honestly tell you that if you hold on to God, He WILL help. I don't know
if you ever heard of EWTN. It's a Catholic Network that has Mass on
every day, and is a wonderful way to see God's word. They often talk
about suffering WITH Christ. It HAS made a huge difference to me, and I
suggest that you try to use God through this. He WANTS us to ask for His
help. He wants to help us, He does not want to see us suffer.
I hope I helped build you up a little. If there's ANYTHING I can do to
help direct you toward God if you need it, please don't hesitate to ask.
Love,
Therese
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Recommend Delete Message 12 of 24 in Discussion
From: <NOBR>Liz3079</NOBR> Sent: 11/18/2006 8:30 AM
Hi Theresa
Thanks for the nice letter.I do believe in God and my belief in Him is very strong. I have seen God do so many wondrous things.And answer many prayers.Things are falling into place little by little and I know God has a hand in all of it. If I hadnt believed in God then by now I would have committed suicide because this is so hard to deal with.But I am a very strong person and have been through so much in my life. This is just another trial and tribulation God is testing me with. Its just the daily pain.And this is a workers comp case and they dont make anything easy for you.Actually I dont think they even really care or believe me. I would never lie or fake anything. The pain makes me so tired though. I dont have anyone supportive ,no husband,mom doesnt care and my boys dont really understand.They are older though.Im just glad if i was going to get this I got it after the kids were grown.It doesnt matter how much I am put through,I still believe in God,its just Im drained from this constant daily pain.It makes me so sick.I will be ok because I am so tough and because I know there is a tomorrow. Things are all for reasons,no matter what happens in a persons life.I have never felt God was punishing me,I have always been a good person,very kindhearted and would help anyone out if I could. I think mostly the devil is trying to break me down,but he cant do it.God gets me through each day.The cold has really made me miserable.I worry about the money situation. Im trying to get a pension started but the fella handling the pensions just dont seem to care. I have to correspond by phone and everytime I call he just says I will put the papers in the mail today and that was 2 months ago.Everytime I call its the same thing.This is my money I have earned for working all my life and I deserve it and want it started.Hes way too far away to drive to.I get really scared as I dont want to lose everything I have because he dont seem to want to get on the ball and get this money coming in for me. I just dont know what else to do but just keep calling.I dont feel like getting out and working in all this horrible pain.I cant even think straight anymore.You take care.Gentle hugs. Liz
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Recommend Delete Message 13 of 24 in Discussion
From: <NOBR>nanny250</NOBR> Sent: 11/18/2006 2:38 PM
Hello, Did the patch make you feell different. I'm really nervous taking it. The doctor told me to ask my support group, people who have taken it and know what it feels like. Does it make you sleepy, speedy, loopy, or out of control? Please write back. I'm only 25 and I hate this, I can bearly funtion in my everyday life and have not met one person other than me that suffers from this errible disease.
Rebekah
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Recommend Delete Message 14 of 24 in Discussion
From: <NOBR>therese521</NOBR> Sent: 11/18/2006 4:36 PM
Eileen,
That's funny. Reading your e-mail was as if I was reading what I wrote
myself! I feel the EXACT same way about the Fentanyl patch and the
oxycontin.
Hope that helps Nanny.
Love,
Therese
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Recommend Delete Message 15 of 24 in Discussion
From: <NOBR>Liz3079</NOBR> Sent: 11/19/2006 10:58 AM
Hi Nanny
I am sorry you have rsd.You are so young. When I was diagnosed with it I had never heard of it neither but I am a tough person and I was so sure Id beat it,whatever it was .I read up on it but kept saying there is no way I will end up like some of the people who had it.But that was over 2 years ago and I still have it. Having a support group to turn to really helps a lot to make it through really bad days when you are so depressed.The people who also have it are the only ones who really understand what its like and how it affects us. I am glad I can come here to post .It helps me keep my sanity.Gentle hugs. Liz
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Recommend Delete Message 2 of 3 in Discussion
From: byrd45 Sent: 11/24/2006 11:02 PM
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Recommend Delete Message 16 of 24 in Discussion
From: <NOBR>byrd45</NOBR> Sent: 11/20/2006 8:35 AM
Hi Kevin,
I am so glad your daughter called when she did! I think we all have thoughts like you have at least in one respect or another. I'm glad you didn't do it though and won't go there again. It's understandable getting to that point and I know I have been pushed that far once myself it isn't a happy memory for me either. I was so depressed and tired of the pain that I was plotting ways I could kill myself. I know that sounds horrible,but that is how far pain can push you if you aren't careful. I have my priorities all in line now and would never ever consider that now and can't even believe I did once but I did. I think alot of us have been pushed farther than we would like because of RSD. I was so depressed back then and didn't realise it but one of the meds I was taking was causing additional depression and suicidal thoughts. When we finally realised what was going on and I was weaned off the medicine I started seeing things clearer.All I have to do now is look at my husband and my two sons and I know that I can stand any pain if it means I can be here for them. I would have destroyed their lives if I had done that and I am so thankful I didn't. Sometimes I feel like life tests us but we just have to put our claws out and hang on for the ride no matter what.
Love,
Robyn
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