Guest guest Posted March 14, 2000 Report Share Posted March 14, 2000 << From: " Valued Compaq Customer " <ruf-caimi@...> Hi , I keep thinking about this remicade thing. I guess I am hoping I will have my life back. That is what my heart is hoping but my mind knows that is gone forever. This is crazy, but I need to ask if you can move around better? My hip is so bad, my regular doctor wants me to make sure the RA doctor looks at it. He thinks they can do something. I think I want an x-ray to see what is going on or if any damage is being done. Somedays, I think I still don't understand this whole RA thing. I was telling my doctor about you and the remicade. He feels it is the only way for me to go, any relief will be better than what I have now. >> , I understand how you feel and have been there. But your life isn't gone. Just new doors are opening to you. There are many things I can't do now and never will do again, and I do have my " feel sorry for myself " days. I will never go jogging or running again. I will never climb trees. I will never do cartwheels or somersaults. I will never have my own children. But those thoughts don't last as long as they used to. I have a new life. We all have one life to live, but during that one lifetime, we live *several* different lives. What you are going through now is the beginning of a new life. The difference with us is we know a new part of life is starting for us. It is a big change so it is more noticeable than others. Some people go through life without hitting big speed bumps, we just happened to run over a mountain sized one. For me, I am thankful to have this experience. I am even honored. I have learned and gained so much from it. I have a different outlook on life and see things that others don't see and don't take things for granted, like getting up out of bed in the morning without help. I also know who my real friends are. What you need to do now is grieve your old life. It died in a sense. And a new was born. You just need to decide that you aren't going to let it win. You have to fight it everyday. If you let it get to you too much, it wins. It's a battle you will have to fight possibly the rest of your life. You have to decide now whether you are going to fight it every step of the way, or give in. It took me a long time to accept my RA. And some days it still gets to me, and always will. But now the person I am today includes the arthritis part. My name is . I love to write poetry. I love cats. I love to read. I have arthritis. All of those things make me who I am today. And I like what the arthritis has given to me. The knowledge it has given me. To answer your question, I can't say that I can move around better now. But I feel more free. I can't really explain it. Since I have had such a severe case for 18 years I have extensive permanent damage to my joints. I will always be slower than a turtle. BUT I can move around with less pain. What I am hoping for is to slow down the damage so it doesn't get any worse. So far, I am not in a wheelchair permanently, to get me from room to room, and I am thankful for that. But I do use it for long distance walking. If the Remicade will decrease the pain and swelling, I will be happy. Moving around easier, to be honest, never occurred to me. Since I am so used to how I am now. What might be going on now with your hip is a bad flare. I have had some pretty awful ones where I couldn't walk, sit, lay down, etc. About 10 years ago my hip went into a really bad flare and I got a cortisone shot straight into my hip. That helped. Plus a lot of rest and staying off of it. When you are in a flare it is best to stay off the joint as much as possible. To help relieve some of the pain you could put a heating pad on it, take a hot bath, hot tub, massage it, and just rest as much as possible. If that doesn't work? Get a pint of Vodka! LOL The pain won't go away, but you won't care! How long have you had your RA? May I ask hold old you are? What meds are you on now and what have you tried? Smiles, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2000 Report Share Posted March 14, 2000 Today i am feeling very angry about RA and JRA. I hate what it does to people and to the people who love them. I wish i could take away everyones pain and flush down the tolit where is belongs. I know i sound crazy today and thats the way i feel. My dr has started me on Elavil to help with my sleeping disorder and says that it has anti-depressant in it that should help with my nerves but i have to get over the side affects that happen when you first start taking it and for me it is being tired and edgy. I can't seem to sit and doing anything for very long. oh i hope this goes away soon cause i hate feeling like i have no control. so i am venting my anger at the illness that causes so many people i care about and my son so much pain. i know you will all understand why i am doing this. i hope everyone of you feel better cause now that i have vented a little i feel a little better. Thanks you all for listening to a crazed woman. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2000 Report Share Posted March 14, 2000 thanks a i am hugging you now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2000 Report Share Posted March 14, 2000 you are making me cry but i guess i need to do that to relieve some tension thank you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2000 Report Share Posted March 14, 2000 , I'm sorry you are hurting so bad today. I really do understand, and you are not a crazed woman. I think it is harder to cope when it is your own children that you watch suffer. I hope the Elevil helps you to sleep better and feel better. When I first started taking AD's I was very tired, but it has gotten much better now. Vent all you need to, there are plenty of people here that understand. a ----- Original Message ----- From: <12372101@...> < onelist> Sent: Tuesday, March 14, 2000 5:29 PM Subject: Re: [ ] Remicade ~ > From: 12372101@... > > Today i am feeling very angry about RA and JRA. I hate what it does to people > and to the people who love them. > > I wish i could take away everyones pain and flush down the tolit where is > belongs. I know i sound crazy today and thats the way i feel. My dr has > started me on Elavil to help with my sleeping disorder and says that it has > anti-depressant in it that should help with my nerves but i have to get over > the side affects that happen when you first start taking it and for me it is > being tired and edgy. I can't seem to sit and doing anything for very long. > oh i hope this goes away soon cause i hate feeling like i have no control. > > so i am venting my anger at the illness that causes so many people i care > about and my son so much pain. i know you will all understand why i am doing > this. > > i hope everyone of you feel better cause now that i have vented a little i > feel a little better. Thanks you all for listening to a crazed woman. > > > > ------------------------------------------------------------------------ > MAXIMIZE YOUR CARD, MINIMIZE YOUR RATE! > Get a NextCard Visa, in 30 seconds! Get rates as low as > 0.0% Intro or 9.9% Fixed APR and no hidden fees. > Apply NOW! > 1/2122/3/_/478567/_/953072955/ > ------------------------------------------------------------------------ > > URL to change your membership options: /group/ > RA-support website: http://www.rasupport.webprovider.com/ > Our chat room: www.delphi.com/RheumatoidArth1/start > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2000 Report Share Posted March 14, 2000 ((((((((((((()))))))))))))) Gentle hugs for you and . ----- Original Message ----- From: <12372101@...> < onelist> Sent: Tuesday, March 14, 2000 6:12 PM Subject: Re: [ ] Remicade ~ > From: 12372101@... > > thanks a i am hugging you now. > > ------------------------------------------------------------------------ > DON'T HATE YOUR RATE! > Get a NextCard Visa, in 30 seconds! Get rates as low as > 0.0% Intro or 9.9% Fixed APR and no hidden fees. > Apply NOW! > 1/2120/3/_/478567/_/953075586/ > ------------------------------------------------------------------------ > > URL to change your membership options: /group/ > RA-support website: http://www.rasupport.webprovider.com/ > Our chat room: www.delphi.com/RheumatoidArth1/start > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2000 Report Share Posted March 15, 2000 Dearest , I am sooo sorry! And don't ever feel like you are being a pain. Take that off your shoulders now. That is what [i am][we are] here for. You can count on me. =) We are all shoulders for all of us to lean on. We have to stick together and fight this battle together. All of together will make us all that much stronger! I am really sorry to hear that you won't get the Remicade. I can't say enough good about it. Today I can close my right hand almost all the way! And my left hand isn't far behind. I can only imagine how much better I feel after Monday's treatment! My blood pressure is also a little high, but not too much. But I am still able to take the Remicade. Maybe once you have that under control you can try the Enbrel or Remicade? Have you tried Arava? You take that orally. I have been on that over a year now and at first it showed dramatic results, though it did slow down. I am sure it is still doing something. Maybe that one would work for you? I only know very little about Prosorba, but I sure wouldn't want to go that route. (Personal opinion) If that is the way you go, I will look forward to hearing about it from you. If you ever need to, cry on my cyber-arthritic shoulder, gently. Hugs! Sues Quote Link to comment Share on other sites More sharing options...
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