Joined
·
6 Posts
Hello from Oregon, looking for people who can relate,:wink2: after living 17 years with a Lupus Diagnosis
Hello
1 - 12 of 12 Posts
Hi Queen and welcome to the best place on the net.
I am glad you found us here. I am sorry you have been dealing with Lupus for 17 years but I am hopeful that it has not caused you too much heartache.
I assume your on meds and have a regular Rheumy doctor that you treat with? I love my Rheumy doctor and when you have a good doc that is half the battle won.
Nice to meet you and come join us in the chat room sometime.
I am glad you found us here. I am sorry you have been dealing with Lupus for 17 years but I am hopeful that it has not caused you too much heartache.
I assume your on meds and have a regular Rheumy doctor that you treat with? I love my Rheumy doctor and when you have a good doc that is half the battle won.
Nice to meet you and come join us in the chat room sometime.
:wavey: Queen,
Welcome to the site. You will definitely find support here. The members are more than happy to share their experience, knowledge, and :hug:.
Brookings is such a beautiful spot. It is definitely one of the places I would like to visit again.
Take care,
Lazylegs
Welcome to the site. You will definitely find support here. The members are more than happy to share their experience, knowledge, and :hug:.
Brookings is such a beautiful spot. It is definitely one of the places I would like to visit again.
Take care,
Lazylegs
Joined
·
6 Posts
Wow
Thank you for your kind welcome. I fear I will be the black sheep however! I do not recommend, but am curious if anyone has gotten so sick of it all they just quit going to their Dr?
I know that sounds crazy, but after 14 years of poking, testing, and drugs that sometimes worked sometimes didn't... After taking this pill for that side effect and that pill for the other side effect and then this pill for the side effect for the drug you are taking for the other side effect.....It all becomes frustrating and you walk away!!!
It has been 2 1/2 years since I walked away from a GREAT Rheumy. I know it makes know sense and I know I am sick and should go back.....But I don't want to.
I am not a whack job, I swear. I am so blessed to be on the mild to moderate side of this disease and probably am insulting those struggling for their life, and I truly don't mean to be. I am curious if anyone else has done this and with what results and how long did you go, without intervention?
Thank you for your kind welcome. I fear I will be the black sheep however! I do not recommend, but am curious if anyone has gotten so sick of it all they just quit going to their Dr?
I know that sounds crazy, but after 14 years of poking, testing, and drugs that sometimes worked sometimes didn't... After taking this pill for that side effect and that pill for the other side effect and then this pill for the side effect for the drug you are taking for the other side effect.....It all becomes frustrating and you walk away!!!
It has been 2 1/2 years since I walked away from a GREAT Rheumy. I know it makes know sense and I know I am sick and should go back.....But I don't want to.
I am not a whack job, I swear. I am so blessed to be on the mild to moderate side of this disease and probably am insulting those struggling for their life, and I truly don't mean to be. I am curious if anyone else has done this and with what results and how long did you go, without intervention?
Joined
·
1,471 Posts
Hi there and welcome to the Forum
I dont think you are insulting anybody as a result of your decision to stop treatment.I think that everyone has a right to make their own decisions with regard to their health and what interventions they consider appropriate. You have made a decision based on 14 years of interventions which you obviously felt were causing you more problems than they were solving. I dont just mean physical problems. The psychological problems that this disease comes along with are immense and, I believe, very understated.
For some people, as you say, there is very little choice with regard to treatment because they would be in serious difficulties if they chose to stop their treatment. For others the disease can wax and wane and cause all sorts of problems but may never get to a critical point. Others have gone into remission - some medicated and some unmedicated. Thats the one predictable thing about Lupus - its unpredictability.
I havent got to a point where I would consider stopping treatment - mostly because I believe the treatment keeps me at a functioning level and I need to function in order to get on with my life. I do know from reading these boards that some people did stop their treatment and some ended up getting very sick though.
I would be a bit concerned that you dont have anyone at all monitoring you, especially when you say you are sick at the moment. When you walked away from your Rheumy, did you do it by simply not returning or did you tell him that you were stopping treatment? Would you even consider making an appointment just to check how things are with you? Perhaps run a series of blood tests, check your kidney function, that sort of thing?
I dont know many consultants who would be happy with you going against their recommendations but its definitely something that I think you should at least consider - maybe an annual check up just in case something is going on that you are unaware of. Kidney damage can be notoriously silent, for example, until a critical point is reached.
Anyway, welcome again and I hope you enjoy the site and get something from it
Take good care
Joan:rose:
I dont think you are insulting anybody as a result of your decision to stop treatment.I think that everyone has a right to make their own decisions with regard to their health and what interventions they consider appropriate. You have made a decision based on 14 years of interventions which you obviously felt were causing you more problems than they were solving. I dont just mean physical problems. The psychological problems that this disease comes along with are immense and, I believe, very understated.
For some people, as you say, there is very little choice with regard to treatment because they would be in serious difficulties if they chose to stop their treatment. For others the disease can wax and wane and cause all sorts of problems but may never get to a critical point. Others have gone into remission - some medicated and some unmedicated. Thats the one predictable thing about Lupus - its unpredictability.
I havent got to a point where I would consider stopping treatment - mostly because I believe the treatment keeps me at a functioning level and I need to function in order to get on with my life. I do know from reading these boards that some people did stop their treatment and some ended up getting very sick though.
I would be a bit concerned that you dont have anyone at all monitoring you, especially when you say you are sick at the moment. When you walked away from your Rheumy, did you do it by simply not returning or did you tell him that you were stopping treatment? Would you even consider making an appointment just to check how things are with you? Perhaps run a series of blood tests, check your kidney function, that sort of thing?
I dont know many consultants who would be happy with you going against their recommendations but its definitely something that I think you should at least consider - maybe an annual check up just in case something is going on that you are unaware of. Kidney damage can be notoriously silent, for example, until a critical point is reached.
Anyway, welcome again and I hope you enjoy the site and get something from it
Take good care
Joan:rose:
I can relate to the sentiment - that's for sure. Many people with many different sorts of illnesses probably feel the same way at one time or another. However, I think a checkup once a year for you would be a great idea. Realize that you can tell the doctor exactly what you told us... and also realize that any treatment/medication he or she recommends you can discuss and ultimately veto if you feel strongly about it.
I hope that you will go back for a visit, and get a check-up with either your GP or your rheumy. I'm not sure in what way you are sick at the moment, but if it is lupus related then I think just going back on some baseline medication such as Plaquenil (which has next to no side effects for most people for the long term) could be very helpful to you.
Please consider it...
I hope that you will go back for a visit, and get a check-up with either your GP or your rheumy. I'm not sure in what way you are sick at the moment, but if it is lupus related then I think just going back on some baseline medication such as Plaquenil (which has next to no side effects for most people for the long term) could be very helpful to you.
Please consider it...
queenlawson,
Hi and welcome to the site. You will find that there are a lot of people on the site that you can relate to and that can relate to you.
I hope you will join us in the chat room soon and have some fun sharing your story with us. There is good information and advise on the site. Like you it has been 17 years with the sle and I am still here and so are you. I hope that you are doing well.
Hi and welcome to the site. You will find that there are a lot of people on the site that you can relate to and that can relate to you.
I hope you will join us in the chat room soon and have some fun sharing your story with us. There is good information and advise on the site. Like you it has been 17 years with the sle and I am still here and so are you. I hope that you are doing well.
Joined
·
6 Posts
Thank you
I am so grateful for your kind words, I truly was afraid to let people know where I am at right now. I am doing ok, as with all of us you know when you are feeling better and when you are ok and when you are really sick. I am doing ok for now, however I do see my GP and he does do blood work every year and so far so good. He has told me if it comes back showing a flare I need to go to my Specialist, which I will. I do know I am not feeling as well as I have been and little things keep cropping up, so it is time to go again. Thank you again for not judging, I am astounded by that. I will be praying for you all.:yes:
I am so grateful for your kind words, I truly was afraid to let people know where I am at right now. I am doing ok, as with all of us you know when you are feeling better and when you are ok and when you are really sick. I am doing ok for now, however I do see my GP and he does do blood work every year and so far so good. He has told me if it comes back showing a flare I need to go to my Specialist, which I will. I do know I am not feeling as well as I have been and little things keep cropping up, so it is time to go again. Thank you again for not judging, I am astounded by that. I will be praying for you all.:yes:
Hi Queen and welcome to the board.
No one here judges anyone and that is one of the reasons I love this place. You will find support, commpassion, understanding, knowledge, friends and a few laughs too here at The Lupus Site but you will never feel judged.....this I can promise you.
I am glad to hear you go to your GP annually and get your bloods checked. I am thrilled that your Lupus is mild and I certainly hope it stays that way. It sounds like things might be creeping up and your thinking about maybe going back to a specialist. Whatever you decide will be the best choice for you.
I do hope to get to know you better. Come join us in the chat room sometime.
No one here judges anyone and that is one of the reasons I love this place. You will find support, commpassion, understanding, knowledge, friends and a few laughs too here at The Lupus Site but you will never feel judged.....this I can promise you.
I am glad to hear you go to your GP annually and get your bloods checked. I am thrilled that your Lupus is mild and I certainly hope it stays that way. It sounds like things might be creeping up and your thinking about maybe going back to a specialist. Whatever you decide will be the best choice for you.
I do hope to get to know you better. Come join us in the chat room sometime.
Joined
·
6 Posts
KarolH
Thank you! I just got blood work back in fact and my suspicion was correct, all my levels are elevated and I will be going to a Rheum soon. I really wanted to make it to the three year mark without a specialist, I know that seems trivial compared to my health, but it was a goal I set and it will not happen.
My health is more important and if I let this go a couple more months I could be in serious trouble. And so goes life.... I am a stubborn fool sometimes! lol
Thank you! I just got blood work back in fact and my suspicion was correct, all my levels are elevated and I will be going to a Rheum soon. I really wanted to make it to the three year mark without a specialist, I know that seems trivial compared to my health, but it was a goal I set and it will not happen.
My health is more important and if I let this go a couple more months I could be in serious trouble. And so goes life.... I am a stubborn fool sometimes! lol
Hi Queen lawson
Just wanted to welcome you to the board. Sorry that you have been battling lupus for so long and that you are having problems at the moment. I hope you get to see your rheumy soon and things get sorted for you.
Hope that you feel better soon
Deb
Just wanted to welcome you to the board. Sorry that you have been battling lupus for so long and that you are having problems at the moment. I hope you get to see your rheumy soon and things get sorted for you.
Hope that you feel better soon
Deb
1 - 12 of 12 Posts
