Guest guest Posted December 4, 2004 Report Share Posted December 4, 2004 Marina, sorry that your going through such a terrible time. I can't imagine how you work with all the pain that your going through, your a very strong lady. I too have so much pain, it's hard for me to live with it. The Humira isn't really working well for me, and I hope that in January, I can try something else. We can't give up, it's so hard though at times. I hope that you can get your short term disability, that will give you a break, and maybe you can start feeling better. Take care, and my prayers are with you, Tawny --- In , " marina_troi " <nefertiti@i...> wrote: > > Hello, all!! I need to vent a little. I went back to work this past > September after being off for 6 months due to surgical > complications. Things were a little rough there in the begining. I > was dependent on high doses of steroids to get me through the day > because the Remicade failed me after 9 months and Kineret was > worthless for me. The MTX isn't as effective and the plaquinal > doesn't seem to do much either. Any way, I got started on Enbrel > and, after 2 weeks, I was surprised at how effective it was. I > didn't realize how miserable I was until I had some relief. I > started out slowly with work. A few hours a week to kind of break > me in. Now, I used to to 12 hour shifts 3x a week or more. My > orthopedist didn't want me to do that cbecause he felt that an 8 > hour shift 5x a week would be easier on me with the RA and FM. I > agreed. Of course, my manager has found a way to let that bite me > in the butt! She decided the 8 hour day I would work would be from > 11am to 730pm. I like that I can sleep in, but I have found that > when I am working or doing something stressful, 12 noon seems to be > the witching hour for me. At that time I can feel the fatigue > kicking in, though it is managable. By 4 or 5pm, I am completely > spent. I tried the shift for the first time last week and I know it > isn't going to work out for me. I have been with the same hospital > for 12 years now. I have been in the same department for the last 8 > years. I love what I do and I know that I will have to give it > eventually. The Enbrel hasn't been as effective as it was in the > begining. I know that it is in part do to the increased physical > and mental stress at work. Working 5 days a week with those hours > means that I have Saturday and Sunday to recover. My manager says > she has to cover those hours because we are so busy in the later > hours. As soon as she fills the 3 12hour shifts that are now > available, or at least one of them, I can go to days. Of course, I > have to wait until they go through their orientation first. > Depending on their experience it could take as long as 8 months. I > don't think I will live that long. I have tried to find a position > in other departments, but the only ones available would put me in a > worse position. I can't afford to go on disability at this time. I > have to bee off for 4 consecutive months before I can collect long > term disability. In August, I will have enough time built back up > to allow me to go on disability (short term). I don't know if I > will make it. Unfortunately, my RA (dx 2 years ago) has been very > agressive. I have damage to many of my joints. The worse being my > right hip. It has been causing such severe back pain that I feel > like my hip and back are going to give out on me. I go see my rheumy > in a few weeks. I know he will listen and advise me well. I just > feel so frustrated and broken down, both physically AND emotionaly > Thank you for listening. It is so theraputic talking to those who > go through the same thing or at least similarly enough. Blessed > Be...Marina in Oh Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2004 Report Share Posted December 4, 2004 Marina, sorry that your going through such a terrible time. I can't imagine how you work with all the pain that your going through, your a very strong lady. I too have so much pain, it's hard for me to live with it. The Humira isn't really working well for me, and I hope that in January, I can try something else. We can't give up, it's so hard though at times. I hope that you can get your short term disability, that will give you a break, and maybe you can start feeling better. Take care, and my prayers are with you, Tawny > > Hello, all!! I need to vent a little. I went back to work this past > September after being off for 6 months due to surgical > complications. Things were a little rough there in the begining. I > was dependent on high doses of steroids to get me through the day > because the Remicade failed me after 9 months and Kineret was > worthless for me. The MTX isn't as effective and the plaquinal > doesn't seem to do much either. Any way, I got started on Enbrel > and, after 2 weeks, I was surprised at how effective it was. I > didn't realize how miserable I was until I had some relief. I > started out slowly with work. A few hours a week to kind of break > me in. Now, I used to to 12 hour shifts 3x a week or more. My > orthopedist didn't want me to do that cbecause he felt that an 8 > hour shift 5x a week would be easier on me with the RA and FM. I > agreed. Of course, my manager has found a way to let that bite me > in the butt! She decided the 8 hour day I would work would be from > 11am to 730pm. I like that I can sleep in, but I have found that > when I am working or doing something stressful, 12 noon seems to be > the witching hour for me. At that time I can feel the fatigue > kicking in, though it is managable. By 4 or 5pm, I am completely > spent. I tried the shift for the first time last week and I know it > isn't going to work out for me. I have been with the same hospital > for 12 years now. I have been in the same department for the last 8 > years. I love what I do and I know that I will have to give it > eventually. The Enbrel hasn't been as effective as it was in the > begining. I know that it is in part do to the increased physical > and mental stress at work. Working 5 days a week with those hours > means that I have Saturday and Sunday to recover. My manager says > she has to cover those hours because we are so busy in the later > hours. As soon as she fills the 3 12hour shifts that are now > available, or at least one of them, I can go to days. Of course, I > have to wait until they go through their orientation first. > Depending on their experience it could take as long as 8 months. I > don't think I will live that long. I have tried to find a position > in other departments, but the only ones available would put me in a > worse position. I can't afford to go on disability at this time. I > have to bee off for 4 consecutive months before I can collect long > term disability. In August, I will have enough time built back up > to allow me to go on disability (short term). I don't know if I > will make it. Unfortunately, my RA (dx 2 years ago) has been very > agressive. I have damage to many of my joints. The worse being my > right hip. It has been causing such severe back pain that I feel > like my hip and back are going to give out on me. I go see my rheumy > in a few weeks. I know he will listen and advise me well. I just > feel so frustrated and broken down, both physically AND emotionaly > Thank you for listening. It is so theraputic talking to those who > go through the same thing or at least similarly enough. Blessed > Be...Marina in Oh Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2004 Report Share Posted December 4, 2004 Hello Marina, Glad you expressed your feelings here. Do you think a call to employee assistance could help? Perhaps there are resources or options you haven't considered... I'm sure it will all work out in the end. Sierra --- In , " marina_troi " <nefertiti@i...> wrote: > > Hello, all!! I need to vent a little. I went back to work this past > September after being off for 6 months due to surgical > complications. Things were a little rough there in the begining. I > was dependent on high doses of steroids to get me through the day > because the Remicade failed me after 9 months and Kineret was > worthless for me. The MTX isn't as effective and the plaquinal > doesn't seem to do much either. Any way, I got started on Enbrel > and, after 2 weeks, I was surprised at how effective it was. I > didn't realize how miserable I was until I had some relief. I > started out slowly with work. A few hours a week to kind of break > me in. Now, I used to to 12 hour shifts 3x a week or more. My > orthopedist didn't want me to do that cbecause he felt that an 8 > hour shift 5x a week would be easier on me with the RA and FM. I > agreed. Of course, my manager has found a way to let that bite me > in the butt! She decided the 8 hour day I would work would be from > 11am to 730pm. I like that I can sleep in, but I have found that > when I am working or doing something stressful, 12 noon seems to be > the witching hour for me. At that time I can feel the fatigue > kicking in, though it is managable. By 4 or 5pm, I am completely > spent. I tried the shift for the first time last week and I know it > isn't going to work out for me. I have been with the same hospital > for 12 years now. I have been in the same department for the last 8 > years. I love what I do and I know that I will have to give it > eventually. The Enbrel hasn't been as effective as it was in the > begining. I know that it is in part do to the increased physical > and mental stress at work. Working 5 days a week with those hours > means that I have Saturday and Sunday to recover. My manager says > she has to cover those hours because we are so busy in the later > hours. As soon as she fills the 3 12hour shifts that are now > available, or at least one of them, I can go to days. Of course, I > have to wait until they go through their orientation first. > Depending on their experience it could take as long as 8 months. I > don't think I will live that long. I have tried to find a position > in other departments, but the only ones available would put me in a > worse position. I can't afford to go on disability at this time. I > have to bee off for 4 consecutive months before I can collect long > term disability. In August, I will have enough time built back up > to allow me to go on disability (short term). I don't know if I > will make it. Unfortunately, my RA (dx 2 years ago) has been very > agressive. I have damage to many of my joints. The worse being my > right hip. It has been causing such severe back pain that I feel > like my hip and back are going to give out on me. I go see my rheumy > in a few weeks. I know he will listen and advise me well. I just > feel so frustrated and broken down, both physically AND emotionaly > Thank you for listening. It is so theraputic talking to those who > go through the same thing or at least similarly enough. Blessed > Be...Marina in Oh Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2004 Report Share Posted December 4, 2004 Hello Marina, Glad you expressed your feelings here. Do you think a call to employee assistance could help? Perhaps there are resources or options you haven't considered... I'm sure it will all work out in the end. Sierra > > Hello, all!! I need to vent a little. I went back to work this past > September after being off for 6 months due to surgical > complications. Things were a little rough there in the begining. I > was dependent on high doses of steroids to get me through the day > because the Remicade failed me after 9 months and Kineret was > worthless for me. The MTX isn't as effective and the plaquinal > doesn't seem to do much either. Any way, I got started on Enbrel > and, after 2 weeks, I was surprised at how effective it was. I > didn't realize how miserable I was until I had some relief. I > started out slowly with work. A few hours a week to kind of break > me in. Now, I used to to 12 hour shifts 3x a week or more. My > orthopedist didn't want me to do that cbecause he felt that an 8 > hour shift 5x a week would be easier on me with the RA and FM. I > agreed. Of course, my manager has found a way to let that bite me > in the butt! She decided the 8 hour day I would work would be from > 11am to 730pm. I like that I can sleep in, but I have found that > when I am working or doing something stressful, 12 noon seems to be > the witching hour for me. At that time I can feel the fatigue > kicking in, though it is managable. By 4 or 5pm, I am completely > spent. I tried the shift for the first time last week and I know it > isn't going to work out for me. I have been with the same hospital > for 12 years now. I have been in the same department for the last 8 > years. I love what I do and I know that I will have to give it > eventually. The Enbrel hasn't been as effective as it was in the > begining. I know that it is in part do to the increased physical > and mental stress at work. Working 5 days a week with those hours > means that I have Saturday and Sunday to recover. My manager says > she has to cover those hours because we are so busy in the later > hours. As soon as she fills the 3 12hour shifts that are now > available, or at least one of them, I can go to days. Of course, I > have to wait until they go through their orientation first. > Depending on their experience it could take as long as 8 months. I > don't think I will live that long. I have tried to find a position > in other departments, but the only ones available would put me in a > worse position. I can't afford to go on disability at this time. I > have to bee off for 4 consecutive months before I can collect long > term disability. In August, I will have enough time built back up > to allow me to go on disability (short term). I don't know if I > will make it. Unfortunately, my RA (dx 2 years ago) has been very > agressive. I have damage to many of my joints. The worse being my > right hip. It has been causing such severe back pain that I feel > like my hip and back are going to give out on me. I go see my rheumy > in a few weeks. I know he will listen and advise me well. I just > feel so frustrated and broken down, both physically AND emotionaly > Thank you for listening. It is so theraputic talking to those who > go through the same thing or at least similarly enough. Blessed > Be...Marina in Oh Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2004 Report Share Posted December 5, 2004 Dear Marina, I am in awe of anyone who can put in an 8-hour day while suffering! I don't think I could handle a paid job, though I probably some days work more than 8 hours at my " unpaid job " --being a wife, mother, and grandmother. My family is ecstatic when they see me working; they don't realize how a person has to bite their lip and just keep on going sometimes. Are you getting enough nourishment mid-day to keep your strength up? Enough protein? I've started having a snack mid-afternoon, just a glass of milk or a cheese stick, to keep my blood sugar steady. That seems to help. Well, it's off to church for me soon, then some quality time with the grandkids before coming home to do Christmas cards. Here's hoping you don't have to work that shift too long, Judi in Indiana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2004 Report Share Posted December 5, 2004 Dear Marina, I am in awe of anyone who can put in an 8-hour day while suffering! I don't think I could handle a paid job, though I probably some days work more than 8 hours at my " unpaid job " --being a wife, mother, and grandmother. My family is ecstatic when they see me working; they don't realize how a person has to bite their lip and just keep on going sometimes. Are you getting enough nourishment mid-day to keep your strength up? Enough protein? I've started having a snack mid-afternoon, just a glass of milk or a cheese stick, to keep my blood sugar steady. That seems to help. Well, it's off to church for me soon, then some quality time with the grandkids before coming home to do Christmas cards. Here's hoping you don't have to work that shift too long, Judi in Indiana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2004 Report Share Posted December 5, 2004 I'm not sure I can offer any great advice, Marina, but I'm very sorry to hear that you are having such a hard time. I don't know how you've managed to do your difficult job when you're feeling so bad. Would you consider trying to get in to see your rheumatologist sooner? Have you had any imaging studies done on your hip lately? I'll tell you where to go! Mayo Clinic in Rochester http://www.mayoclinic.org/rochester s Hopkins Medicine http://www.hopkinsmedicine.org [ ] The Pain Endures > > > Hello, all!! I need to vent a little. I went back to work this past > September after being off for 6 months due to surgical > complications. Things were a little rough there in the begining. I > was dependent on high doses of steroids to get me through the day > because the Remicade failed me after 9 months and Kineret was > worthless for me. The MTX isn't as effective and the plaquinal > doesn't seem to do much either. Any way, I got started on Enbrel > and, after 2 weeks, I was surprised at how effective it was. I > didn't realize how miserable I was until I had some relief. I > started out slowly with work. A few hours a week to kind of break > me in. Now, I used to to 12 hour shifts 3x a week or more. My > orthopedist didn't want me to do that cbecause he felt that an 8 > hour shift 5x a week would be easier on me with the RA and FM. I > agreed. Of course, my manager has found a way to let that bite me > in the butt! She decided the 8 hour day I would work would be from > 11am to 730pm. I like that I can sleep in, but I have found that > when I am working or doing something stressful, 12 noon seems to be > the witching hour for me. At that time I can feel the fatigue > kicking in, though it is managable. By 4 or 5pm, I am completely > spent. I tried the shift for the first time last week and I know it > isn't going to work out for me. I have been with the same hospital > for 12 years now. I have been in the same department for the last 8 > years. I love what I do and I know that I will have to give it > eventually. The Enbrel hasn't been as effective as it was in the > begining. I know that it is in part do to the increased physical > and mental stress at work. Working 5 days a week with those hours > means that I have Saturday and Sunday to recover. My manager says > she has to cover those hours because we are so busy in the later > hours. As soon as she fills the 3 12hour shifts that are now > available, or at least one of them, I can go to days. Of course, I > have to wait until they go through their orientation first. > Depending on their experience it could take as long as 8 months. I > don't think I will live that long. I have tried to find a position > in other departments, but the only ones available would put me in a > worse position. I can't afford to go on disability at this time. I > have to bee off for 4 consecutive months before I can collect long > term disability. In August, I will have enough time built back up > to allow me to go on disability (short term). I don't know if I > will make it. Unfortunately, my RA (dx 2 years ago) has been very > agressive. I have damage to many of my joints. The worse being my > right hip. It has been causing such severe back pain that I feel > like my hip and back are going to give out on me. I go see my rheumy > in a few weeks. I know he will listen and advise me well. I just > feel so frustrated and broken down, both physically AND emotionaly > Thank you for listening. It is so theraputic talking to those who > go through the same thing or at least similarly enough. Blessed > Be...Marina in Oh Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2004 Report Share Posted December 5, 2004 I'm not sure I can offer any great advice, Marina, but I'm very sorry to hear that you are having such a hard time. I don't know how you've managed to do your difficult job when you're feeling so bad. Would you consider trying to get in to see your rheumatologist sooner? Have you had any imaging studies done on your hip lately? I'll tell you where to go! Mayo Clinic in Rochester http://www.mayoclinic.org/rochester s Hopkins Medicine http://www.hopkinsmedicine.org [ ] The Pain Endures > > > Hello, all!! I need to vent a little. I went back to work this past > September after being off for 6 months due to surgical > complications. Things were a little rough there in the begining. I > was dependent on high doses of steroids to get me through the day > because the Remicade failed me after 9 months and Kineret was > worthless for me. The MTX isn't as effective and the plaquinal > doesn't seem to do much either. Any way, I got started on Enbrel > and, after 2 weeks, I was surprised at how effective it was. I > didn't realize how miserable I was until I had some relief. I > started out slowly with work. A few hours a week to kind of break > me in. Now, I used to to 12 hour shifts 3x a week or more. My > orthopedist didn't want me to do that cbecause he felt that an 8 > hour shift 5x a week would be easier on me with the RA and FM. I > agreed. Of course, my manager has found a way to let that bite me > in the butt! She decided the 8 hour day I would work would be from > 11am to 730pm. I like that I can sleep in, but I have found that > when I am working or doing something stressful, 12 noon seems to be > the witching hour for me. At that time I can feel the fatigue > kicking in, though it is managable. By 4 or 5pm, I am completely > spent. I tried the shift for the first time last week and I know it > isn't going to work out for me. I have been with the same hospital > for 12 years now. I have been in the same department for the last 8 > years. I love what I do and I know that I will have to give it > eventually. The Enbrel hasn't been as effective as it was in the > begining. I know that it is in part do to the increased physical > and mental stress at work. Working 5 days a week with those hours > means that I have Saturday and Sunday to recover. My manager says > she has to cover those hours because we are so busy in the later > hours. As soon as she fills the 3 12hour shifts that are now > available, or at least one of them, I can go to days. Of course, I > have to wait until they go through their orientation first. > Depending on their experience it could take as long as 8 months. I > don't think I will live that long. I have tried to find a position > in other departments, but the only ones available would put me in a > worse position. I can't afford to go on disability at this time. I > have to bee off for 4 consecutive months before I can collect long > term disability. In August, I will have enough time built back up > to allow me to go on disability (short term). I don't know if I > will make it. Unfortunately, my RA (dx 2 years ago) has been very > agressive. I have damage to many of my joints. The worse being my > right hip. It has been causing such severe back pain that I feel > like my hip and back are going to give out on me. I go see my rheumy > in a few weeks. I know he will listen and advise me well. I just > feel so frustrated and broken down, both physically AND emotionaly > Thank you for listening. It is so theraputic talking to those who > go through the same thing or at least similarly enough. Blessed > Be...Marina in Oh Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2004 Report Share Posted December 5, 2004 June, I am sorry to hear about your friend. It is difficult to lose someone that has touched your life for that long. My rheumy and my ortho docs keep me stocked in pain meds. Darvocet and Vicodin are what I have, plus Neurotin. I take one or the other narcotic along with neurotin. At least I can sleep through it. In fact, my rheumy said he would rather me take narcotics all day than the steroids. But, as long as I stay with my job at those awfull hours, I may have to go back on them. One nice thing about working closely with docs is that I have an anesthesiologist who gives me loading doses of Depomedrol and Decadron (both steroids) and then tapers me off. I don't do this lightly. My rheumy knows about it too. The Enbrel does do a great deal. Of that I have no doubt. Unfortunately, it is begining to fail. Just like all the other meds. Oh well, thank you for listening and for your kind words of wisdom. Life isn't life if you live it in pain!!....Blessed Be....Marina > Hi Marina, I am so sorry you are having to put up with so much continuing pain along with so many others in the same boat. > I take Enbrel alone and while it does help and while it does help (sometimes I wonder), I too, have a great deal of pain. My rheumy and GP know me well and fully agree on my usage of pain medication. I start my day with 80 mg Oxycontin, drink my coffee and wait for it to kick in. Depending on what my plans are, I would no doubt take another 80 mg in a couple of hours. Usually by 5pm I have taken 3 to 4 80 mg Oxycontin. If I am going out for the evening, I take another one before I leave the house. Before I go to bed I take 2 percocet and a sleeping pill. None of these take away the pain 100% since I am waiting for a knee and ankle replacement and these alone cause me lots of grief. > I guess what I am saying, is, whatever I require in pain med, I take, but it did take a lot of pressure on my doctors by me because I told them I will not live a life with pain that interferes with my life . > > Last week my best friend of 40 years died suddenly at age 62 and by the day of the funeral I could barely walk to the car. Because of the emotional pain, my body pain reached an all time high but because of the pain med I took, I was able to function through all the turmoil. > > I have a medical reports from 20+ years ago that states, " we cannot cure you, but we can assure you we will keep you comfortable " . I used to carry this with me and occasionally show my caregivers to remind them of this promise. > > Hugs > June > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2004 Report Share Posted December 5, 2004 June, I am sorry to hear about your friend. It is difficult to lose someone that has touched your life for that long. My rheumy and my ortho docs keep me stocked in pain meds. Darvocet and Vicodin are what I have, plus Neurotin. I take one or the other narcotic along with neurotin. At least I can sleep through it. In fact, my rheumy said he would rather me take narcotics all day than the steroids. But, as long as I stay with my job at those awfull hours, I may have to go back on them. One nice thing about working closely with docs is that I have an anesthesiologist who gives me loading doses of Depomedrol and Decadron (both steroids) and then tapers me off. I don't do this lightly. My rheumy knows about it too. The Enbrel does do a great deal. Of that I have no doubt. Unfortunately, it is begining to fail. Just like all the other meds. Oh well, thank you for listening and for your kind words of wisdom. Life isn't life if you live it in pain!!....Blessed Be....Marina > Hi Marina, I am so sorry you are having to put up with so much continuing pain along with so many others in the same boat. > I take Enbrel alone and while it does help and while it does help (sometimes I wonder), I too, have a great deal of pain. My rheumy and GP know me well and fully agree on my usage of pain medication. I start my day with 80 mg Oxycontin, drink my coffee and wait for it to kick in. Depending on what my plans are, I would no doubt take another 80 mg in a couple of hours. Usually by 5pm I have taken 3 to 4 80 mg Oxycontin. If I am going out for the evening, I take another one before I leave the house. Before I go to bed I take 2 percocet and a sleeping pill. None of these take away the pain 100% since I am waiting for a knee and ankle replacement and these alone cause me lots of grief. > I guess what I am saying, is, whatever I require in pain med, I take, but it did take a lot of pressure on my doctors by me because I told them I will not live a life with pain that interferes with my life . > > Last week my best friend of 40 years died suddenly at age 62 and by the day of the funeral I could barely walk to the car. Because of the emotional pain, my body pain reached an all time high but because of the pain med I took, I was able to function through all the turmoil. > > I have a medical reports from 20+ years ago that states, " we cannot cure you, but we can assure you we will keep you comfortable " . I used to carry this with me and occasionally show my caregivers to remind them of this promise. > > Hugs > June > > Quote Link to comment Share on other sites More sharing options...
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