Guest guest Posted May 28, 2003 Report Share Posted May 28, 2003 Hi It's okay to vent.. We all do sometimes. I wish there was something else that they could do for us also.. Mine also just told me to take some pain meds and increased the pred.. Also gave me Ambien, in case I have a hard time sleeping because of the pain.. I don't know how that is to help, but I guess we shall see.. Nice to see you here.. Please take care and hopefully pain free. Kelley in Colorado Kelleyak31@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2003 Report Share Posted May 28, 2003 Hi , I feel for you the same thing is happening to me. I was down to 8mg of pred and now up to 32mg, sometimes I can not stand it. I just want to scream and my doc does not help at all and let alone not being able to play with my two boy's the way I want. My chest feels like it has 20 lbs weight on it when I go to bed. All my doc wants to do is give me pain meds and increase the pred, there has to be something better out there for me . It has been almost two years since I was released from the hospital after 20 days of 105* fever and Pericarditis around the heart, just seems like when all is getting better BAM!!! and the dragon strikes again, sorry to vent, but I sure know how you feel. There has to be some better medicine and treatment out there. Well I hope you have a pain free day! Brown St. Louis, MoKelleyak31@... wrote: Hi all.. I had to go see my primary dr today, as I have been having chest pain. Not heart related though.. He said that my heart sounds really good, and he doesn't think that it is Pericarditis (inflamation around the heart lining) probably just Pleurasy again.. Doesn't want to do another CT of the chest as we just did that 6months ago and it doesn't show up on anything.. So we are going to increase the pred back to 20mgs, yuk,, for the rest of the week, then go back to 10mgs for another 5 days, then drop back to 5mgs.. If I still have the pain by Friday then I have to go back.. He said that this is probably all just to do with the Still's and Auto Immune Disease.. so we are not going to try any antibiotics at this time, I don't respond to them anyway. I am just so frustrated, I started feeling better last week, then I get brought back down again with something else... Last night all I could do was cry, as again I am out of work.. I am so tired of this Darn thing, I just want my old life back.. Sorry I guess I had to vent to people who understand, I am sure my mom is getting tired of hearing me cry all the time.. lol :-).. Thanks for listeningKelley in Colorado Kelleyak31@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2003 Report Share Posted May 28, 2003 Hey , Haven't seen you post before. Take care of yourself and know there are many of us here thinking of you. Lynn Renae Dudenhoefer lynndude@... -On any path that you may stroll, -keep your angel in your soul! -- Re: Frustrated..... Hi , I feel for you the same thing is happening to me. I was down to 8mg of pred and now up to 32mg, sometimes I can not stand it. I just want to scream and my doc does not help at all and let alone not being able to play with my two boy's the way I want. My chest feels like it has 20 lbs weight on it when I go to bed. All my doc wants to do is give me pain meds and increase the pred, there has to be something better out there for me . It has been almost two years since I was released from the hospital after 20 days of 105* fever and Pericarditis around the heart, just seems like when all is getting better BAM!!! and the dragon strikes again, sorry to vent, but I sure know how you feel. There has to be some better medicine and treatment out there. Well I hope you have a pain free day! Brown St. Louis, MoKelleyak31@... wrote: Hi all.. I had to go see my primary dr today, as I have been having chest pain. Not heart related though.. He said that my heart sounds really good, and he doesn't think that it is Pericarditis (inflamation around the heart lining) probably just Pleurasy again.. Doesn't want to do another CT of the chest as we just did that 6months ago and it doesn't show up on anything.. So we are going to increase the pred back to 20mgs, yuk,, for the rest of the week, then go back to 10mgs for another 5 days, then drop back to 5mgs.. If I still have the pain by Friday then I have to go back.. He said that this is probably all just to do with the Still's and Auto Immune Disease.. so we are not going to try any antibiotics at this time, I don't respond to them anyway. I am just so frustrated, I started feeling better last week, then I get brought back down again with something else... Last night all I could do was cry, as again I am out of work.. I am so tired of this Darn thing, I just want my old life back.. Sorry I guess I had to vent to people who understand, I am sure my mom is getting tired of hearing me cry all the time.. lol :-).. Thanks for listeningKelley in Colorado Kelleyak31@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2003 Report Share Posted May 28, 2003 Hey Lynn, I have been with the group for a little over a year but with my two boys I have been in the background, I post every now and then and read the daily post to try and keep up. I love this group and has helped me tremendously with getting a handle or at least knowledgable about this disease, just sometimes I just need to vent and hope that it will all get better, but thanks for listening and may your days be pain free! take care, Lynn Dudenhoefer <lynndude@...> wrote: Hey , Haven't seen you post before. Take care of yourself and know there are many of us here thinking of you. Lynn Renae Dudenhoefer lynndude@... -On any path that you may stroll, -keep your angel in your soul! -- Re: Frustrated..... Hi , I feel for you the same thing is happening to me. I was down to 8mg of pred and now up to 32mg, sometimes I can not stand it. I just want to scream and my doc does not help at all and let alone not being able to play with my two boy's the way I want. My chest feels like it has 20 lbs weight on it when I go to bed. All my doc wants to do is give me pain meds and increase the pred, there has to be something better out there for me . It has been almost two years since I was released from the hospital after 20 days of 105* fever and Pericarditis around the heart, just seems like when all is getting better BAM!!! and the dragon strikes again, sorry to vent, but I sure know how you feel. There has to be some better medicine and treatment out there. Well I hope you have a pain free day! Brown St. Louis, MoKelleyak31@... wrote: Hi all.. I had to go see my primary dr today, as I have been having chest pain. Not heart related though.. He said that my heart sounds really good, and he doesn't think that it is Pericarditis (inflamation around the heart lining) probably just Pleurasy again.. Doesn't want to do another CT of the chest as we just did that 6months ago and it doesn't show up on anything.. So we are going to increase the pred back to 20mgs, yuk,, for the rest of the week, then go back to 10mgs for another 5 days, then drop back to 5mgs.. If I still have the pain by Friday then I have to go back.. He said that this is probably all just to do with the Still's and Auto Immune Disease.. so we are not going to try any antibiotics at this time, I don't respond to them anyway. I am just so frustrated, I started feeling better last week, then I get brought back down again with something else... Last night all I could do was cry, as again I am out of work.. I am so tired of this Darn thing, I just want my old life back.. Sorry I guess I had to vent to people who understand, I am sure my mom is getting tired of hearing me cry all the time.. lol :-).. Thanks for listeningKelley in Colorado Kelleyak31@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2003 Report Share Posted May 28, 2003 , Ambien is not a bad drug, but one thing I have learned sleep and rest is the most important thing. The more the body stresses the flare ups are likely to start. I finally got in to see a specialist at St Louis University it has taken about 3 months, I'll let you know how it goes. I have an appointment o 7/03, I am going to push to get on the list for enbrel so that I can get off this Pred. Well take care and I hope things get better for you I'll keep you in my prayers. Take care, Kelleyak31@... wrote: Hi It's okay to vent.. We all do sometimes. I wish there was something else that they could do for us also.. Mine also just told me to take some pain meds and increased the pred.. Also gave me Ambien, in case I have a hard time sleeping because of the pain.. I don't know how that is to help, but I guess we shall see.. Nice to see you here.. Please take care and hopefully pain free. Kelley in Colorado Kelleyak31@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2003 Report Share Posted May 29, 2003 > I think we should all take a few moments today to pause and be the sh...tuffing out of a pillow. Dearest Kelley, > I'm sorry to hear your out of work again but this disease wants it's > own pace. Listen to it and try to be good and do something relaxing > and fun. Your held in loving thoughts dear, Melt > ----- Original Message ----- > From: Kelleyak31@... > . Last night all I could do was cry, as again I am out of work.. I am > so tired of this Darn thing, I just want my old life back.. Sorry I > guess I had to vent to people who understand, I am sure my mom is > getting tired of hearing me cry all the time.. lol :-).. Thanks for > listening > > Kelley in Colorado > Kelleyak31@... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2003 Report Share Posted May 29, 2003 it's been a while and I am glad to hear from you but so sorry to hear things have not been well. I know your boys mean the world to you and it must be a challenge. This disease is nasty and sometimes I feel like mourning the life I didn't get to have. But I bet for your family and children you carry on. Please ask for another opinion if your not getting better. I know we are not the doctors but I would ask if there is more that can be tried. I'm still here anytime, and my new other email is mellymelt@... Big hugs and lots of love for you my friend, till soon, Melt ----- Original Message ----- From: Brown There has to be some better medicine and treatment out there. Well I hope you have a pain free day! Brown St. Louis, Mo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2003 Report Share Posted May 29, 2003 Dearest Kelley, I'm sorry to hear your out of work again but this disease wants it's own pace. Listen to it and try to be good and do something relaxing and fun. Your held in loving thoughts dear, Melt ----- Original Message ----- From: Kelleyak31@... . Last night all I could do was cry, as again I am out of work.. I am so tired of this Darn thing, I just want my old life back.. Sorry I guess I had to vent to people who understand, I am sure my mom is getting tired of hearing me cry all the time.. lol :-).. Thanks for listeningKelley in Colorado Kelleyak31@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2003 Report Share Posted May 29, 2003 You and I do think alike ! lets do two pillows...3 if we must !! Liz NJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2003 Report Share Posted June 3, 2003 , So sorry it has taken me so long to respond to your e-mail. I've had a rough couple of days myself. How are things going with the chest pain? I've been thinking of you, and wanted to check in and see how you are progressing. There was one time that I woke up in the middle of the night with the worst chest pain. I was convinced that I was actually having a heart attack, it was that bad. My father rushed me to the ER and we found a blood clot. I know this is not the case with you, but I know how frightening and frustrating this sort of thing can be. I truly hope you are feeling better and they have come up with a solution. Please let me know how it's going. Bridget Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2003 Report Share Posted June 3, 2003 Hi Bridget.. I am feeling better now.. Thank you.. I have started back on the 10mg of Pred again today.. I went back to work today, I am tired but I feel pretty good other than that.. I hope you are doing well.. The dr didn't think that it was a clot.. I have a fear of going to the ER as I work with all of them there.. lol.. I would be to embarresed if I had to get undressed or do the women thing, had that once and can't look at that er dr anymore.. lol.. I will go if I need to, but I try my hardest to stay out of there.. lol Stay pain free.. Love ya Kelley in Colorado Kelleyak31@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2003 Report Share Posted June 4, 2003 Kelley...I can see why you might be embarrassed but if you had chest pain..I hope you had an ekg...I'm a nurse..what do you do at the hospital? ( I don't work now..I have a 8 yr old and a 3 year old).... Im sure you took care of it...just checking....you can always say you don't want this or that kind of exam..it is your right ..your bod !! Feel well Liz NJ .. Quote Link to comment Share on other sites More sharing options...
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