Guest guest Posted June 19, 2006 Report Share Posted June 19, 2006 I'm delighted that I've finally started my care with the Hepatology Department at the University of Washington, but have mixed feelings about what I'm learning. The doctor tells me my 5-year prognosis is very good, which is great news, but I continue to live with daily pain and exhaustion. I cannot cut back on work. My husband hasn't held a steady full-time job for almost three years, so my family's livelihood & insurance depends solely on me. This stress doesn't help, but I'm lucky to work with understanding and supportive colleagues in an extraordinarily stressful working environment; I'm a union negotiator/rep responsible for six contracts and hundreds of complicated workers. I took 600 mg URSO daily 1999-2005, then went to 1200 in January, now I'm up to 1800 mg daily. I weigh about 150 lbs. Codeine is part of my daily diet, too. Most of the time, my rib cage area feels beaten & bruised. It's a rare day I can make it to lunchtime without taking pain medication, and unassisted restful sleep is a thing of the past. I trust my new medical team and my labs support their assessment, but everything seems so surreal. They say I'm a " healthy " PSC patient, but I feel terrible virtually all of the time. I've begun going to yoga classes to help with circulation, relaxation, and stretching (when I extend my body, it helps alleviate some of the internal pain/pressure). Does anybody have any suggestions for other ways of dealing with pain? Has anybody else been told they're doing well, while their body is telling them otherwise? Debbie in Seattle UC 1972, J Pouch Colectomy 1991, chronic pouchitis, abnormal LFTs 1999, PSC confirmed 2005 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2006 Report Share Posted June 20, 2006 > > I'm delighted that I've finally started my care with the Hepatology > Department at the University of Washington, but have mixed feelings > about what I'm learning. The doctor tells me my 5-year prognosis is > very good, which is great news, but I continue to live with daily pain > and exhaustion. > Dear Debbie, The constant pain you are suffering is not normal, especially if the doctors are telling you how well you are going. Have you made it plain to them how often and how severe the pain is? Unless you make sure they are aware of it, a passing mention is often missed or disregarded. It is not whinging to inform the hep of the pain. I only have pain when I am having an attack or a blockage. These events have subsided almost completely since my hep put me on daily antibiotics in January. I also take probiotics, fish oil, multivitamins and milk thistle tablets. Stress I believe is a real killer. I have retired now but was under a lot of stress before leaving work. Even if I over-commit myself to things now, I find myself getting ill. I realize your situation with the family commitments, but you may have to put your health first and look at going on sickness benefits. When you take a stand for your own welfare, it is often surprising how others can rise to the occasion. My thoughts and good wishes are with you. Norma (from down under in Queensland, Australia) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2006 Report Share Posted June 20, 2006 > > I'm delighted that I've finally started my care with the Hepatology > Department at the University of Washington, but have mixed feelings > about what I'm learning. The doctor tells me my 5-year prognosis is > very good, which is great news, but I continue to live with daily pain > and exhaustion. > Dear Debbie, The constant pain you are suffering is not normal, especially if the doctors are telling you how well you are going. Have you made it plain to them how often and how severe the pain is? Unless you make sure they are aware of it, a passing mention is often missed or disregarded. It is not whinging to inform the hep of the pain. I only have pain when I am having an attack or a blockage. These events have subsided almost completely since my hep put me on daily antibiotics in January. I also take probiotics, fish oil, multivitamins and milk thistle tablets. Stress I believe is a real killer. I have retired now but was under a lot of stress before leaving work. Even if I over-commit myself to things now, I find myself getting ill. I realize your situation with the family commitments, but you may have to put your health first and look at going on sickness benefits. When you take a stand for your own welfare, it is often surprising how others can rise to the occasion. My thoughts and good wishes are with you. Norma (from down under in Queensland, Australia) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2006 Report Share Posted June 21, 2006 One thing about pain (and I think we're all different) .... I've realized is you have to stay ahead of the curve, if that means being ON pain relievers 24/7, do it ... I now do 1/2 tablet of hydrocodone in the AM and PM ... it helps tremendously...(it's 5-500 mg per tablet, which is only 5 mg pain killer, the rest ibuprofen I think, something that helps)...anyhow, it works for me. So, it's a very small dose (only 2.5 each time) but it makes a difference between being on the couch and up and about. Bless your heart that you have to work - have you looked into how much SSA you could get if you did go on disability? I've been working and pushing through, but finally stopped last year... How much you get depends on what you put into the system, you can check easily with teh Social Security Administration...for me it's not much, but in my circumstance I should get 1,000 per month, plus $500 for having a daughter (if your spouse makes less than 14K, I think, you can get up to 2,000 for a family - including having a dependant child) and then earn up to $850 a month extra..again, it's not much...but anyhow...I'm just learning how to live lean. But living is the point, huh? I notice that the more relaxed I am, the better ... massage is great....the more tense, the more pain! I hope this is somehow helpful. Hang in there Barbara in MD Yahoo! Messenger with Voice. PC-to-Phone calls for ridiculously low rates. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2006 Report Share Posted June 21, 2006 One thing about pain (and I think we're all different) .... I've realized is you have to stay ahead of the curve, if that means being ON pain relievers 24/7, do it ... I now do 1/2 tablet of hydrocodone in the AM and PM ... it helps tremendously...(it's 5-500 mg per tablet, which is only 5 mg pain killer, the rest ibuprofen I think, something that helps)...anyhow, it works for me. So, it's a very small dose (only 2.5 each time) but it makes a difference between being on the couch and up and about. Bless your heart that you have to work - have you looked into how much SSA you could get if you did go on disability? I've been working and pushing through, but finally stopped last year... How much you get depends on what you put into the system, you can check easily with teh Social Security Administration...for me it's not much, but in my circumstance I should get 1,000 per month, plus $500 for having a daughter (if your spouse makes less than 14K, I think, you can get up to 2,000 for a family - including having a dependant child) and then earn up to $850 a month extra..again, it's not much...but anyhow...I'm just learning how to live lean. But living is the point, huh? I notice that the more relaxed I am, the better ... massage is great....the more tense, the more pain! I hope this is somehow helpful. Hang in there Barbara in MD Yahoo! Messenger with Voice. PC-to-Phone calls for ridiculously low rates. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2006 Report Share Posted June 23, 2006 Thank you for your supportive response. It's comforting to know I have friends/allies around the globe! Debbie in Seattle > > > > I'm delighted that I've finally started my care with the Hepatology > > Department at the University of Washington, but have mixed feelings > > about what I'm learning. The doctor tells me my 5-year prognosis is > > very good, which is great news, but I continue to live with daily pain > > and exhaustion. > > > Dear Debbie, > > The constant pain you are suffering is not normal, especially if the > doctors are telling you how well you are going. Have you made it > plain to them how often and how severe the pain is? Unless you make > sure they are aware of it, a passing mention is often missed or > disregarded. It is not whinging to inform the hep of the pain. > > I only have pain when I am having an attack or a blockage. These > events have subsided almost completely since my hep put me on daily > antibiotics in January. I also take probiotics, fish oil, > multivitamins and milk thistle tablets. > > Stress I believe is a real killer. I have retired now but was under a > lot of stress before leaving work. Even if I over-commit myself to > things now, I find myself getting ill. I realize your situation with > the family commitments, but you may have to put your health first and > look at going on sickness benefits. When you take a stand for your own > welfare, it is often surprising how others can rise to the occasion. > > My thoughts and good wishes are with you. > Norma > (from down under in Queensland, Australia) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2006 Report Share Posted June 23, 2006 Thank you for your supportive response. It's comforting to know I have friends/allies around the globe! Debbie in Seattle > > > > I'm delighted that I've finally started my care with the Hepatology > > Department at the University of Washington, but have mixed feelings > > about what I'm learning. The doctor tells me my 5-year prognosis is > > very good, which is great news, but I continue to live with daily pain > > and exhaustion. > > > Dear Debbie, > > The constant pain you are suffering is not normal, especially if the > doctors are telling you how well you are going. Have you made it > plain to them how often and how severe the pain is? Unless you make > sure they are aware of it, a passing mention is often missed or > disregarded. It is not whinging to inform the hep of the pain. > > I only have pain when I am having an attack or a blockage. These > events have subsided almost completely since my hep put me on daily > antibiotics in January. I also take probiotics, fish oil, > multivitamins and milk thistle tablets. > > Stress I believe is a real killer. I have retired now but was under a > lot of stress before leaving work. Even if I over-commit myself to > things now, I find myself getting ill. I realize your situation with > the family commitments, but you may have to put your health first and > look at going on sickness benefits. When you take a stand for your own > welfare, it is often surprising how others can rise to the occasion. > > My thoughts and good wishes are with you. > Norma > (from down under in Queensland, Australia) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2006 Report Share Posted June 23, 2006 Thank you for your supportive response. It's comforting to know I have friends/allies around the globe! Debbie in Seattle > > > > I'm delighted that I've finally started my care with the Hepatology > > Department at the University of Washington, but have mixed feelings > > about what I'm learning. The doctor tells me my 5-year prognosis is > > very good, which is great news, but I continue to live with daily pain > > and exhaustion. > > > Dear Debbie, > > The constant pain you are suffering is not normal, especially if the > doctors are telling you how well you are going. Have you made it > plain to them how often and how severe the pain is? Unless you make > sure they are aware of it, a passing mention is often missed or > disregarded. It is not whinging to inform the hep of the pain. > > I only have pain when I am having an attack or a blockage. These > events have subsided almost completely since my hep put me on daily > antibiotics in January. I also take probiotics, fish oil, > multivitamins and milk thistle tablets. > > Stress I believe is a real killer. I have retired now but was under a > lot of stress before leaving work. Even if I over-commit myself to > things now, I find myself getting ill. I realize your situation with > the family commitments, but you may have to put your health first and > look at going on sickness benefits. When you take a stand for your own > welfare, it is often surprising how others can rise to the occasion. > > My thoughts and good wishes are with you. > Norma > (from down under in Queensland, Australia) > Quote Link to comment Share on other sites More sharing options...
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