Guest guest Posted October 15, 2006 Report Share Posted October 15, 2006 Hi - in regards to " all or nothing " I am the same way. It takes a lot for me to get ready and get motivated to go out so when I do I tend to overdo it!!! Then I have to spend the next day resting my swollen joints. When I'm out I want so much to feel normal, have fun and blend in, so I guess I just get a little overly excited and end up doing too much.(and I don't just mean out with friends or my hubby, I also get that excited about going to Target or the book store, I've been stuck at home so much lately I really appreciate walking anywhere) It's hard for me to find a happy medium,though. Glad I'm not alone!! Welcome to the group! - > > Sorry that I have been a 'lurker' for so very long... lots of excuses... but had to respond to this entry... definitely weight cannot be an 'excuse' for having PA.... I have never been overweight... am 5'8 " and have averaged around 110 to 117 life all my life, am 48, went through five pregnancies gaining at least 45 pounds each time... so, although weight always plays a role of some sorts, it can not be the cause of PA. > > We all know that being underweight or overweight can effect us in various ways, it doesn't take a rocket scientist to figure this out. I have people telling me all the time to 'gain weight' and all my problems will go away... sometimes I feel like getting a sledge hammer and banging on all their joints and see how they feel... I have had to accept the fact that no matter how well -intentioned a person may be, that no one can truly understand the depth of our pain unless they have actually experienced it themselves... many people mean well, but pain is (and I suppose always will be) a very misunderstood issue. > > I was in remission for almost an entire a year, strangely enough I actually missed my pain... I think deep inside I knew it was too good to be true or to last... as if nature was teasing me with a bit of normalcy... just waiting for the flare-up to come back in full force... I actually missed my pain because it had become a part of me that I had accepted and learned to live with.... strange, kind of like having hiccups that you want to cease... then when they do stop you keep waiting for the next one to come along.... a good friend of my mom's always told me to wake up every day and think...PMI (Positive Mental Attitude)... easier said than done, I know. Because my mom had Multiple Sclerosis and I always remember her in her wheelchair... I always think of her... she always smiled and said things could always have been worse... that she was blessed to have all the medical equipment and medicines that she needed, a wonderful husband (my dad... amazing man), and a > supportive family and group of friends... these were the blessings that she treasured and never took forgranted... so, I always tell myself that if she were so positive in her situation, that I can do the same... things could always be worse. > > I am so grateful for this Support group of ours... this site has helped me more than all the doctors and medicines combined... each of us is important in our own way, actually having PA and treating PA are not at all the same.... only we can truly understand how each of us feels.... by sharing our stories, our experiences, our advice, our treatment choices, and so on... I have always been happy to see messages that have been posted by some in this group who are living with a person who has PA... it is wonderful to see the genuine concern of a loved one who actually cares enough to read the postings and contribute... > > I know I am rambling... but it has been so long since I posted... too many things going on in my life at the moment (all okay, just hectic... 3 kids in university, family member with Alzheimer's, friend whose son is waiting for a liver trasplant, etc, ... I know that each and every one of us has lots of things going on in our lives...) just had two cortisone injections this morning... one in each foot... am on MTX and Cyclosporine for the time being... just want my feet to feel better so that I can do some walking again.... right now would just love to sleep without pain... the pain just makes me so tired all the time... is this how any of you feel? > > I feel like I am always exhausted... I feel like I am being lazy... especially that I wake up exhausted and in so much pain... I am always waiting for the day that I can wake up and feel fresh and ready to do anything I want... I can just as easily sit home and relax all day or sleep..... OR if I do push myself to get up and out of the house I am on the go like the Duracell Bunny... but then I crash as the day goes on... it seems I am kind of in a 'all or nothing' mode ... I seem to do things in extremes... is anyone else like that? > > I apologize again... I know I am rambling... Anyway, I wish each and everyone of you the best health, with lots of happiness and smiles... > > #2 > > > [Editor's Note: What a lovely first post, . So sorry that your circumstances brought you to us, but I hope you find a lot of information and support. Kathy F.] > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2006 Report Share Posted October 15, 2006 #2...I so appreciate and admire your honesty about how we seem to live in expectation of the next flare when we are doing so well. That is something that I have not seen addressed on this site since I have been a member here. Thank you for opening up and sharing that thought with us. Welcome. -Betz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2006 Report Share Posted October 16, 2006 > > Hi , Wow.....I could have wrote that post to describe myself. I can't ever remember waking up feeling refreshed and it is a long time ago since I awoke without pain. I have always felt lazy but at least with a diagnosis of PsA I know that I am not. Like you I will do everything I can until I drop. Not exactly working with the spoon theory, I seem to save my spoons for doing something I want to do ,like playing with my Grandchildren and then spend them all at once. Keep the light Shining, Ian. Sorry that I have been a 'lurker' for so very long... lots of excuses... but had to respond to this entry... definitely weight cannot be an 'excuse' for having PA.... I have never been overweight... am 5'8 " and have averaged around 110 to 117 life all my life, am 48, went through five pregnancies gaining at least 45 pounds each time... so, although weight always plays a role of some sorts, it can not be the cause of PA. > > We all know that being underweight or overweight can effect us in various ways, it doesn't take a rocket scientist to figure this out. I have people telling me all the time to 'gain weight' and all my problems will go away... sometimes I feel like getting a sledge hammer and banging on all their joints and see how they feel... I have had to accept the fact that no matter how well -intentioned a person may be, that no one can truly understand the depth of our pain unless they have actually experienced it themselves... many people mean well, but pain is (and I suppose always will be) a very misunderstood issue. > > I was in remission for almost an entire a year, strangely enough I actually missed my pain... I think deep inside I knew it was too good to be true or to last... as if nature was teasing me with a bit of normalcy... just waiting for the flare-up to come back in full force... I actually missed my pain because it had become a part of me that I had accepted and learned to live with.... strange, kind of like having hiccups that you want to cease... then when they do stop you keep waiting for the next one to come along.... a good friend of my mom's always told me to wake up every day and think...PMI (Positive Mental Attitude)... easier said than done, I know. Because my mom had Multiple Sclerosis and I always remember her in her wheelchair... I always think of her... she always smiled and said things could always have been worse... that she was blessed to have all the medical equipment and medicines that she needed, a wonderful husband (my dad... amazing man), and a > supportive family and group of friends... these were the blessings that she treasured and never took forgranted... so, I always tell myself that if she were so positive in her situation, that I can do the same... things could always be worse. > > I am so grateful for this Support group of ours... this site has helped me more than all the doctors and medicines combined... each of us is important in our own way, actually having PA and treating PA are not at all the same.... only we can truly understand how each of us feels.... by sharing our stories, our experiences, our advice, our treatment choices, and so on... I have always been happy to see messages that have been posted by some in this group who are living with a person who has PA... it is wonderful to see the genuine concern of a loved one who actually cares enough to read the postings and contribute... > > I know I am rambling... but it has been so long since I posted... too many things going on in my life at the moment (all okay, just hectic... 3 kids in university, family member with Alzheimer's, friend whose son is waiting for a liver trasplant, etc, ... I know that each and every one of us has lots of things going on in our lives...) just had two cortisone injections this morning... one in each foot... am on MTX and Cyclosporine for the time being... just want my feet to feel better so that I can do some walking again.... right now would just love to sleep without pain... the pain just makes me so tired all the time... is this how any of you feel? > > I feel like I am always exhausted... I feel like I am being lazy... especially that I wake up exhausted and in so much pain... I am always waiting for the day that I can wake up and feel fresh and ready to do anything I want... I can just as easily sit home and relax all day or sleep..... OR if I do push myself to get up and out of the house I am on the go like the Duracell Bunny... but then I crash as the day goes on... it seems I am kind of in a 'all or nothing' mode .... I seem to do things in extremes... is anyone else like that? > > I apologize again... I know I am rambling... Anyway, I wish each and everyone of you the best health, with lots of happiness and smiles... > > #2 > > > [Editor's Note: What a lovely first post, . So sorry that your circumstances brought you to us, but I hope you find a lot of information and support. Kathy F.] > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2006 Report Share Posted November 6, 2006 Hi , Welcome back. I'm glad you have rediscovered your voice. lol I tell you, you may not post often but when you do they are well worth waiting for, going by the one I just read. So, don't worry about rambling if that is what you think you were doing. At least when you 'ramble' you make sense, unlike me. lol I liked your 'bewitched' comment in a later post. We have spoken of this type of thing before. One of us would need to invent a device so that when you are talking to the doctor or Rheumy, you can say, 'Well, the pain feels like this' You press a button and Hey Presto! the pain is instantly transferred to them for a few seconds! lol Can you imagine there reaction? 'Ohhhhhhh aaaaaaaaaawwwwwww...................Right! I will do everything I can to get that sorted for you.' lol Good to hear from you. Take care, n a message dated 15/10/2006 20:42:47 GMT Standard Time, nut_tree58@... writes: Sorry that I have been a 'lurker' for so very long... lots of excuses... but had to respond to this entry... definitely weight cannot be an 'excuse' for having PA.... I have never been overweight..Sorry that I have been a 'lurker' for so very long... lots of excuses... but had to respond to this entry... definitely weight cannot be an 'excuse' for having PA.... I have never been overweight..<WBR>. am 5'8 " and have avera Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2006 Report Share Posted November 9, 2006 Hey , Nice to see this response from you.... I always enjoy reading your postings as well... I believe you have been a member longer than I have, as I recall your postings popping up from when I began posting years ago... Thank you for your kind comments about my messages... and YES, I also wish there was that 'MAGIC BUTTON' that we could press when we wanted doctors (and others ) to feel exactly what we feel... not for long, but just enough to get the point across with the appropriate amount of empathy/sympathy as a result... for all our sakes... I look forward to your suggestions....) Take care and thanks again, no. 1 Quote Link to comment Share on other sites More sharing options...
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