I was talking with a friend today that has had lupus for 10 years. She told me that once she stopped fighting the disease and accepted her "new life" with it's challenges, things got easier. I guess I have been FIGHTING for the last 15 months since I found out I had RA. Fighting every day to get my old life back, fighting with my weight gain, hair loss, energy loss and so on. I guess I don't want to accept RA because then I am giving up somehow. I don't think it's right for our doctors to tell us "take the meds or die". That imprints us in a profound way. How are we supposed to BELIEVE in a cure with so much negativity around? Maybe some of you have seen the "SECRET". The princeable of attraction has been around forever, the secret is a new persepective. Anyway, if we accept RA as our new way of life what are we attracting?
Hi H2o-
Your friend is right. I always give up the fight just enough, and it seems to make things a little easier on me. I have been fighting this disease my whole life, and then there were times when I did not fight it at all and just done what I was told.
Like I gave into injections when I had left 2 RD's before and spent the last 5 years just dealing with my JRA. But I gave into the injections.
I think everyone goes thru those times when they want to fight it and when they do not want to fight anymore. But for me when I give in just enough things always seem to go easier for me.
I think right now, I am in the rebellious stage again. I get those every so many years
I don't think you ever stop fighting the disease. You need to accept that you have it and you might sometimes have to make a strategic retreat in the battle but you never stop fighting. Things will never be the exact same as they were before the diagnosis. Even if you go into remission life will have changed. Accepting that changes will/may happen does not mean you are giving upSuch a valid statement, buckeye: "Even if you go into remission life will have changed." Like others who face life-altering experiences, it changes our perspective.
In giving up the fight, I meant to imply the fight against acceptance. The fight against the disease itself is another story ... and a fight I don't plan to give up on. Meds, exercise, stretching, good eating are all part of the arsenal in that fight.
Ahh... acceptance is a given with me
I actually changed RD's, moved to warmer climate, and even stopped meds all together. All in all, I had to accept that this is just the way it is It was nearly impossible for me to get to reach the point of accepting it or whatever you want to call it, but I always did "try". always "educated myself" always looked beyond the present and worked towards the future.
Keep in mind the biolics were not developed yet so the options were very minimal.
It has not been an easy journey nor one that I wanted or would have chosen. Like any of us here with this dreaded disease, you do what you can with the resources you have available to you, problem solve what you must and go on with your life the best that you are able to.
Then maybe some of us end up with yet another problem or illness and you really do have to just roll with it. Maybe it is easier for me now since I do not have the children dependent on me being well to care for them, it seems easier sometimes, and other times not.I think before when the kids were younger I had no other choice than to block out what I could and try to lead as normal as a life that I could and that would most often include, no complaining about the pain while they were around, try to keep pain meds at a minimum and so on. My poor RD got to hear it all! lol.
Never give up is what they say but I have to tell you I have done just that several times, and rebelled against it and have lost the motivation to fight it, which I should have looked at it as "treating it".
Oh well, such is my nature to always do stuff the hard way. Who knows, it might be the "normal way".
jode
This is a great thread, and I seem to go through this struggle daily. Do I give in and quit working? Or battle on hoping I will get back to where I used to be? I feel better and happier when I give in to my new limitations a bit so that I have the energy to enjoy what is important, but I know I would be bored and frustrated to be home all day. Still working it out, I guess.
Laker
Fighting to keep my job for three years and losing made me accept my RA. I did find other interests. It was hard. It seemed all I ever did in my free time was hike. I still struggle but have found my pets, aquariums, and yard to be my focus. Of course, family is on the top of my listI've recently bought and watched the DVD "The Secret" and I happen to believe whole heartily in what it teaches. My daughter watched it with me and when it got to the part about dis-ease she looked at me and said "Momma do you think you could make your arthritis go away just by thinking it away?" I said "Well not exactly Dally. I do believe what they are saying to an extent and I have seen in my own life that when I stop sitting around feeling sorry for myself and whinning about how much I hurt I do begin to feel better; but no, I don't believe it will make it go away......but I do believe it makes it better". I could talk all day on this subject. Years ago I read "The Power of Positive Thinking" and have been practicing the teachings in that book for years. It's the same basic principles but it's centered around christianity. I have developed a very strong faith in god and that too goes a long way toward helping me deal with my lot in life.
Accepting isn't the same as giving up and I think that's the difference you need to understand.
Well said, Lovie, "Accepting isn't the same as giving up..." I believe as others have said--you must accept and move on to enjoy the rest of what you have and build on it. You have heard the saying--one door closes but another opens up.I truly inderstand what you are saying. if i would just accept the fact that i have this disease and all that goes along with it. I wouldnt be soo depressed about it. but i think i have this inner fight going on inside me. if i accept it, than i will sucome to it! But really the disease already has me,i will be no different or sicker if i accept it.
Ok i said those words actually for myself, I guess its all a process we go through. Like stages of a loss. i am still in deniel, but will get there i promise you that!
kel
This is an excellent thread and one that, I think, really needs to be talked about.
I know that acceptance is something that I have had a very hard time with. I was always the caretaker and loved it. Being able to help my family was what I thought defined me. Not consciously thought, but I know, now, that is what I felt.
I was very active. Not like some of you who were always outdoors, or into sports. But I was always moving. If I sat down, I had something to work on, like crocheting or embroidery. Now, I can't even cook dinner. Or crochet, embroider, paint or anything that requires fine hand movement or standing more that a few minutes.
Little by little, I'm trying to accept that I'm not going to get better, so I had best adapt my life to my abilities. I have more happy times since changing my thinking. I still have a lot of joy in my life and those are the things I try to focus on. I do the things I can but am trying very hard not to be depressed if I need to ask for help.
Kel I know exactly what you mean. It is hard to accept that you have health problems that are not going to go away. But you sound as if you are about ready to try to move on. I will be thinking of you.
Hope everyone is feeling better soon,
Hugs to all,
Nini
Hi all, yes, it took me 5 years to admit I had 'the disease' , then and only then did I begin to take the 'proper' drugs to stop the disease from ruining my joints. I read the post of people who are afraid of the meds, (which are scary), but NOT taking anything is just not going to help us. I've tried that and probably everyone here who has had this disease a long time has felt better and somehow thought 'hey I don't need these meds anymore' other people say , 'just throw them away', etc. THATS the scary part for me is that people will give up on treatment, you'll have to go back to the Rhumey, start all over, be in pain, have stiffness and swelling, etc......etc....So, acceptance, and 'fighting' to me is keeping AHEAD of this stuff with all my might. My doctor and I and my family fight this together....It's such a roller coaster ride. SarahKel,
I feel just as you do and I think it just takes time for us to move to this new stage of life. Even though I know this is true I have not been able to do it. I think I need my dr to say to me that I am not going to get better and that I need to make changes in my life. I am feeling ready to have this conversation when I go next week. Hardly a day goes by lately when I think - if this is the best it is going to be, I can't keep living life in this way. I guess that is at least a step further down the road to acceptance.
Laker
Acceptance can be so very hard at times. I looked at my acceptance as ok...so I have it and it can be bad...but where can I positively focus my energy to make me better and help others get better. Once I accepted I had to makes some major changes in my life because of the ra, it was like inner peace finally washed thru my brain and body.
I feel we go thru this several times because our "normal" is constantly changing.
I thought about your replies last night. We are all so unique and yet RA gives us a common bond. I guess my "fear" is that accepting the dis-ease will allow it to consume me. I have been into alternative health for over 20 years, I am a reiki master (energy work). The first time I took a med was when I was diag. with RA. My fight is very strong. I do understand on some level the benifit of acceptance; I would love to have a day where I am not thinking about my health! Guess it already consumes me. I apprecaite you all so much and your insight and experience. I am blessed with a partner that is SO supportive and encouraging. If I choose to "let go" and go with the flow; in my mind I know that would be easier. Baby steps...to acceptance.For me acceptance has been that I cannot do the things I used to. That was the most difficult part. I do not accept that I will never get better. I still have hope that some med. will make the difference or who knows, REMISSION. It was important for me to find new interests and I still get bored. I also still get jealous when I am around people who still do the things I used to, mainly hiking, my work and traveling. It really bugs me I cannot work. I never worried about money because I always had plenty of options to make money
Gramma, You are so right. It is a process. I think I have accepted it and bam - a flare hits and I forget ever feeling well. That is what I am working on now - reminding myself that flares do subside - even if I have to up the pred to do it
SO I think I sort of seperated the RA from me like it is a blob in my body that gives me a hard time and beats me up from inside. THe chiropractor helps enormously , my back only hurts now after I mow lawn so I gotta remember to mow before I go to the chiro and get a mower with an automatic start or hire it done ( now that is a adaptation I can definately live with!)
jode
Acceptance
of arthritis then requires a choice between two options, whiwhich are: wallow in self-pity or find other activities which will quite likely
result in new interests.
To
wallow in self-pity makes everyone around you miserable and angry
becbecause they aren't responsible for your health issues either. You risk driving away the very people who care for you and that you quite likely
rely on.
Ok... the difference between RA & JRA is... well JRA'er's who have not had the pleasure of having better meds to take than asprin when they were DXed. Is that we just learned to deal with what JRA threw at us. We were kids and you know how kids are... they will just adapt to it or will find another way to do what they want to do or move on to something they can do.
I have always had to adapt my life to JRA, until I was 12 when remission hit. But I still had things I did not do because I was so use to not doing them and I still done things like JRA was still active. I even had some joint damage probably another reason for why I done things the same because to me JRA was still there. Heck, when I went into remission I did not even know that is what it was, until I joined the message board. To me I thought the JRA went away, but it started to come back when I was 17.
My point is when you grow up with RA, you accept it. When you fall ill with RA it is harder to accept it because your life has changed and will never be the same.
I do still go thru having to adapt and get use to not being able to do things that I once use to be able to do. Like I use to be able to get in the tub and out of the tub without assisstance, but now I do not take a bath because I cannot get out without having hubby help me out. I use to be able to kneel, but now it just about kills me and makes pain rush to my head when I rest on my knees. I use to be able to get out of the floor by myself, would crawl over to the couch and pull myself up, but now I cannot even do that. I use to be able to get off most couches by myself with the rock back and forth motion and grab the coffee table, but now I cannot even hold on to the coffee table because of my hands, I have to ask hubby to help me up. I mean I know I have to ask hubby to help me alot to help me adapt, but I will find a way I can get things done without asking for help eventually. I just have to think of how to do it. But it does seem much easier when I ask for help instead of trying to do it myself. Less frustration, less stress on my ol joints, and less chance of hurting myself.
I am learning a lot right now about jra and watching my daughter go thru her own phases of acceptance. My daughter is 12 and she has gone thru many of the same feelings and emotions that an adult does with this disease. I have also had to go thru my own phase of acceptance with accepting that my precious daughter has ra now too. It was a little bit different than going thru my own acceptance of my own disease. It was by far much harder to work thru trying to accept what Danielle may have to face in the future and also at the same time, work with her on her own acceptance.
It is not only ourselves that have to go thru phases of acceptance with our own disease, but our partners and children as well. I have learned a lot from family on what they also go thru with this. It can closely match what we go thru. I have found tho that they go thru the different phases and stages of acceptance differently than I do.
Thank you for your input. This is a good thread and it made me think of