Guest guest Posted May 11, 2006 Report Share Posted May 11, 2006 Hi everyone! I just joined today and I need some help and suuport. Here's my story, I'm 28 and was just diagnosed with PsA in December. I went from extremely active to not wanting to get out of bed. I am better now with a combo of Humira and Methotrexate, but I still have constant pain and swelling. I am having a lot of trouble coping with the fact that I can't do what I used to do. I can barely go for a walk without being sore and swollen. This leads me to my question: Does anyone have ideas for ways to exercise that does not harm or swell your joints? Also does anyone have a coping statagies so I don't feel " down " about my current condition? It's very hard to get support from friends because they don't understand what I am going through. I sometimes feel I get looked down upon because I can't do things like stais or long walks. Thank you. [Editor's Note: Rabidbat, you don't say how long you've been on Humira and MTX but if it is not helping you, it may be time for your Rheumy to try something else in our arsenal (and there ARE other things to try). One of the best exercises that is kind to joints is swimming/aquatics, particularly if done in a warm water pool. Many YMCAs and other organizations have Aquatics for Arthritics classes. If you are in the US, go to www.arthritis.org and put in your zip code. It will give you a list of the courses and exercise classes expecially designed for people with arthritis. Yes, your friends don't understand, just as you don't understand what it is like to lose a child, be an illegal immigrant in America, be gay or a host of other things. None of us can really walk in the shoes of another, so it is best not to EXPECT your friends to fully understand. They can't. Also, don't expect them to be mind readers - if you can't do something, you need to TELL them. Those of us who have suffered with this disease for a long time (41 years for me!) have learned that the best thing to do is to briefly mourn the things we can't do and then to accept our " new normal " . It is what it is and the sooner we accept who we are, the quicker we can get on with enjoying the new lives we've been given. I never go to bed without also being grateful for 5 things (some as mundane as a green light at a busy intersection and some as large as the love of a dear friend). It helps to focus on what we have, not on what we've lost. Kathy F.] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2006 Report Share Posted May 11, 2006 Hi and welcome! I find that Yoga helps me as well as swimming. Also my depression is helped by a good cry now and then and writing in a journal. Best wishes! rabidbatcujo <mtymry@...> wrote: Hi everyone! I just joined today and I need some help and suuport. Here's my story, I'm 28 and was just diagnosed with PsA in December. I went from extremely active to not wanting to get out of bed. I am better now with a combo of Humira and Methotrexate, but I still have constant pain and swelling. I am having a lot of trouble coping with the fact that I can't do what I used to do. I can barely go for a walk without being sore and swollen. This leads me to my question: Does anyone have ideas for ways to exercise that does not harm or swell your joints? Also does anyone have a coping statagies so I don't feel " down " about my current condition? It's very hard to get support from friends because they don't understand what I am going through. I sometimes feel I get looked down upon because I can't do things like stais or long walks. Thank you. [Editor's Note: Rabidbat, you don't say how long you've been on Humira and MTX but if it is not helping you, it may be time for your Rheumy to try something else in our arsenal (and there ARE other things to try). One of the best exercises that is kind to joints is swimming/aquatics, particularly if done in a warm water pool. Many YMCAs and other organizations have Aquatics for Arthritics classes. If you are in the US, go to www.arthritis.org and put in your zip code. It will give you a list of the courses and exercise classes expecially designed for people with arthritis. Yes, your friends don't understand, just as you don't understand what it is like to lose a child, be an illegal immigrant in America, be gay or a host of other things. None of us can really walk in the shoes of another, so it is best not to EXPECT your friends to fully understand. They can't. Also, don't expect them to be mind readers - if you can't do something, you need to TELL them. Those of us who have suffered with this disease for a long time (41 years for me!) have learned that the best thing to do is to briefly mourn the things we can't do and then to accept our " new normal " . It is what it is and the sooner we accept who we are, the quicker we can get on with enjoying the new lives we've been given. I never go to bed without also being grateful for 5 things (some as mundane as a green light at a busy intersection and some as large as the love of a dear friend). It helps to focus on what we have, not on what we've lost. Kathy F.] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2006 Report Share Posted May 12, 2006 I want to thank everyone for thier support. I find it comforting that I have finally found a group who knows what I am going through. It's also good to know that I am not the only person who feels like this. Today I will start being positive and shed some light on my situation. Thank you to everyone! > > Hi everyone! I just joined today and I need some help and suuport. > > Here's my story, I'm 28 and was just diagnosed with PsA in December. > I went from extremely active to not wanting to get out of bed. I am > better now with a combo of Humira and Methotrexate, but I still have > constant pain and swelling. > > I am having a lot of trouble coping with the fact that I can't do > what I used to do. I can barely go for a walk without being sore and > swollen. > > This leads me to my question: Does anyone have ideas for ways to > exercise that does not harm or swell your joints? Also does anyone > have a coping statagies so I don't feel " down " about my current > condition? > > It's very hard to get support from friends because they don't > understand what I am going through. I sometimes feel I get looked > down upon because I can't do things like stais or long walks. > > Thank you. > > > [Editor's Note: Rabidbat, you don't say how long you've been on Humira and MTX but if it is not helping you, it may be time for your Rheumy to try something else in our arsenal (and there ARE other things to try). One of the best exercises that is kind to joints is swimming/aquatics, particularly if done in a warm water pool. Many YMCAs and other organizations have Aquatics for Arthritics classes. If you are in the US, go to www.arthritis.org and put in your zip code. It will give you a list of the courses and exercise classes expecially designed for people with arthritis. Yes, your friends don't understand, just as you don't understand what it is like to lose a child, be an illegal immigrant in America, be gay or a host of other things. None of us can really walk in the shoes of another, so it is best not to EXPECT your friends to fully understand. They can't. Also, don't expect them to be mind readers - if you can't do something, you need to TELL them. Those of us who have suffered with this disease for a long time (41 years for me!) have learned that the best thing to do is to briefly mourn the things we can't do and then to accept our " new normal " . It is what it is and the sooner we accept who we are, the quicker we can get on with enjoying the new lives we've been given. I never go to bed without also being grateful for 5 things (some as mundane as a green light at a busy intersection and some as large as the love of a dear friend). It helps to focus on what we have, not on what we've lost. Kathy F.] > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2006 Report Share Posted May 12, 2006 Hi . My heart goes out to you. I am remembering how when I was in college and would get so very tired and just want to sleep, girls in the dorm and friends would come into my room and try to wake me saying " Get up and get out....you'll feel better " . I had joint pain and got exhausted so easily. I was not the person they knew a few months earlier and they did not get it and neither did I but I wished they would have said " How can I help you? " rather than believed that I just did not want to get up. I remember the feeling of isolation that gave me. It was the early 80's and there was no internet. My world was exactly what I saw around me....right there in the dorm or on campus. I feel good for you because I know that you have resources that I did not have and I'm thankful that you won't have to wait until you are 45 to find a site like this or good doctors and medications that can help you. You are going to be ok. I want something good to come from this disease in my life. I know one thing for me is that I can relate to my daughter who has high funcioning autism. I now know what it's like to have to pattern your life around a disease. I now notice other people who are in pain and I feel compassion for them. I never really noticed all of the limping people before I became one. So this disease has given me a gift. It has given me compassion. It has given me something good. You can use this disease to become wiser than your " friends " or peers. Many of them are probably in some sort of pain themselves whether physcial like ours or mental. So now you know what it feels like to hurt physically and mentally and you can be compassionate. That is amazing to me and I'm gonna grab it and run with it....or hobble with it....but I'm going with it. You've got a 17 year jump on me to use the gifts this disease can give you. Since you reached out rather than crawled back into yourself, I think you'll do great things with it. My daughter and I have decided to be bigger than our diseases. We have a strong faith and believe that God is bigger than any of this so that helps us hang in there and trust. But no matter what you believe, you can be bigger. I really believe that as simple minded as it sounds. And some folks on here have mentioned being thankful for 5 things each day. That has helped me too. If you have a friend who is sticking by you, it's a great way to get to know them better too if you do that together each day. It helps to keep you doing it if someone else is with you on it. And you can learn what is important to them by learning what they are thankful for. It can be pretty funny sometimes too when you have to get creative because you feel like crap that day. One day recently I looked out my window and said " I'm thankful for that leaf and that leaf and that one and that one and that one over there. " Five. Done. Whatever it takes. Some days you won't be able to stop at 5. It's worth a try. I'll keep you in my thoughts today. And again....I'm thankful that you reached out. Now I have to come up with 4 more! -Betz Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.