Good evening everyone, I hope you are all doing as well as you can be. So I went to my rheumatologist last week and he once again wants to change my medications. Benlysta just didn't work for me and I was so disappointed about that. Now he thinks it's my RA acting up so I get prescribed three new meds. Oh and before I start taking them, they have to do a full blood work-up. Great. I get a phone call today from them telling me that my calcium levels are too high and I have to get tested again in a week. What does that mean? I received no more information than that. I'm so frustrated, I could scream. I, of course, looked it up online. Nothing I read sounded good. My question to all you today is do you ever just feel like enough is enough?
I've felt that way many times over the last 20 some years I've been fighting lupus and all that entails. I have major organ damage, with that all the major organs are damaged one way or the other, I reached my final enough is enough last year. 20 different meds a day, some for lupus, some for stuff the lupus broke, some to help with the side effects caused by the other drugs. I had 8 different specialists, weekly and monthly labs I was screaming, I had grown tired of never getting any better, only getting worse, I had become addicted to opoid medications, don't believe them when they tell you you won't get addicted if you need them, eventually you do only they don't call it addiction, its increasing your doses because they don't help the pain anymore, it took me two years to get free of the pain meds, that was in addition to the other 20 meds I was taking. I stopped all of it a year ago now, no meds, no doctors I do not recommend this to anyone, this is what worked for me to get my life back such as it is. I am no better or worse without the meds, most think I've lost my mind, maybe I have, but I'm a lot happier not being tied to meds, tests and doctors. My life is my own, my thinking is simply I don't mind and it don't matter. Some days are worse than others, but I can deal with it on my terms. So yes we all get that enough is enough feeling, I fought it for a long time, now I'm just so very tired I don't have another fight in me. I'm doing whats right for me, I do not recommend this to anyone . I hope this helps you a little. Hang in there as long as you can, sometimes it does get better.
I feel that way every single minute of every single day for the last six months. I have been taking care of my husband for about fifteen years and have been able to deal with everything pretty well. Now I just feel like I can't take it one more minute!
Every time we turn around there is another condition to deal with - and more meds and more side effects which cause more conditions......and around and around we go....meanwhile he has completely given up.
But then I wake up the next day and start again. It feels like we can't take it anymore but we really can. By the way - I have tried screaming - it actually helps a little :) But I suggest you dont do it when other people are home because it really freaks them out!!!
I am right there with you. 20 years of fighting this horrible disease and I am worn out. I have been told that I must never give up hope. It is not easy to be hopeful in the face of a hopeless situation. But perhaps that is why we have all come together at this particular time in our lives…to encourage one another when we are feeling so discouraged and sick…to tell one another the battle is not over. Let’s hang on to our faith and one another. Let’s encourage one another to hope, even when it seems so utterly hopeless. May God bless us all as we struggle.
Hi, Hopeful: I have also battled lupus for 20 plus years and I have pretty much quit all meds. As you stated, I do not advise this to anyone else. It is just what I decided to do. The meds didn't work, the side effects were miserable, etc., etc. I basically am about the same, without side effects of the drugs. I do, however, take meds when I get a migraine, and I take Norco only when the pain leaves me breathless. So, perhaps, someday there will be a cure for lupus. I doubt it will be in my lifetime. So, there it is...my life as it is today. Some days are better than others; some hours are better than others. I am thankful for the hours or days when I am almost functional :) I still have my sense of humor....and most importantly, I have my faith. May you have some good days, Hopeful....or hours....I take whatever I can get....and keep smiling, even when it hurts and you don't feel like anything is too funny....Take care, my friend. You are not alone
hopeful said:
I've felt that way many times over the last 20 some years I've been fighting lupus and all that entails. I have major organ damage, with that all the major organs are damaged one way or the other, I reached my final enough is enough last year. 20 different meds a day, some for lupus, some for stuff the lupus broke, some to help with the side effects caused by the other drugs. I had 8 different specialists, weekly and monthly labs I was screaming, I had grown tired of never getting any better, only getting worse, I had become addicted to opoid medications, don't believe them when they tell you you won't get addicted if you need them, eventually you do only they don't call it addiction, its increasing your doses because they don't help the pain anymore, it took me two years to get free of the pain meds, that was in addition to the other 20 meds I was taking. I stopped all of it a year ago now, no meds, no doctors I do not recommend this to anyone, this is what worked for me to get my life back such as it is. I am no better or worse without the meds, most think I've lost my mind, maybe I have, but I'm a lot happier not being tied to meds, tests and doctors. My life is my own, my thinking is simply I don't mind and it don't matter. Some days are worse than others, but I can deal with it on my terms. So yes we all get that enough is enough feeling, I fought it for a long time, now I'm just so very tired I don't have another fight in me. I'm doing whats right for me, I do not recommend this to anyone . I hope this helps you a little. Hang in there as long as you can, sometimes it does get better.
To hopeful and Linda Bull, I really appreciate your honesty with your battle. I am just about there with all of this nonsense. I have so many meds that I am not sure are even working anymore. My fight has also been about 20 years long. So much expense, so much time spent waiting to see the dr.,waiting to get results, waiting to get insurance approval. On and on and on. I think the one factor that really got to me was when my dr told me we were going to try to treat my RA instead because that seems to be the main flaring item right now. HHMMM, did I know I had that too???? Not so much. I wonder when will it stop. I do feel the need to apologize to being so negative right now. I usually am a very positive person and I don't want others to get down on where they are with their battle. I believe in fighting the good fight and exhausting all possibilities available. In all of this, I have continued to raise my children, work full time, and be a good wife and partner to my husband of 27 years. I am not sure that I am ready to call it quits on everything, but I do believe that from now on it will be in the back of my mind. Thank you lone wolf and lifeisgood for your encouragement. I appreciate you both. For now, I wish for you all a wonderful evening and a great week.
A doctor at ohsu gave my sister a natural product that put her into complete remission. If you want more info let me know. Have a great night! Jeff