i've had ra for 20 yrs.. i grew up with it.. sometimes its the meds your on, and sometimes its just RA being a real pain.. you can still do all the things you have dreamt of doing... you'll just have to go a little slower about it.. i have never let this thing determine my life for me.. i have lupus as well, so when i overdo it, man do i really pay. i made the mistake one summer, to go to a fun park with friends.. yes, the lupus/ra-pastey white chick went to play in the sun with her friends.. i got soo sick. nearly had a heat stroke, burned from head to toe, i ran a fever for 3 days, chilled and couldnt move hardly at all.. but... i would do it again *L* next time with ALOT more sun screen and maybe take a floppy hat too *L* yes with these conditions doing all the things you want are hard, and come with some pretty painful consequences.. but would you rather curl up inside forever or get out and enjoy life even if it means you have to sleep for 2 or 3 days? dont let it control your life.. enjoy it.. but if your dreams are to climb mt. everest, go to the moon or break the land speed record on foot, well then either be prepared for a few months of sleep or figure out a new plan *L* :) either way, best of luck to ya. i do know how you feel.

Thanks you Beatifullybroken. I am so glad to hear you haven't given up on stuff you want to do. You've made my day :-)

I asked my doc about that very thing. Especially now - I've done pretty well with the meds..for the most part have managed the RA. But when I go for a long walk or do something more active, I hurt all over the next day. You know what he told me? I was out of shape compared to what I was b4 RA. He said expecting to come back to 100% w/out taking the baby steps is unrealistic. I'd gone a year doing as little walking as possible. Then tried to do a long walk and really paid for it. Anyway, I've learned. I have tried to just slowly build up stamina to walk more...it's definitely a slower job than I thought it would be, but it does seem to work.

Wow..beautifully broken sounds like me! I, too, have Lupus and RA. Yes, after a "over do" I pay dearly sometimes for days, but I wouldn't miss the special things I do with my family for anything! My son is getting married and I spent an entire day (10 hours!)shopping with my soon-to-be daughter-in-law for her dress and decorations for the reception. At the end of the day she had to walk to the parking garage and come get me, but I was proud of how long I lasted and how well I did. However, I was miserable almost all of the following week.

So live your life to the fullest. Don't miss "it", maybe take "it" a little slower. If I have the opportunity, when we are on vacation, my day's activities usually end up being about 1/2 of what I would have normally been able to do. So...we just have to take longer vacations! :-)

This is a great place for information and support. I wish you all the best. Keep going!

I'm always fascinated by this topic...especially when people say they haven't had to give up anything they've wanted to do (they just go about it slower). Good for them, but that surely isn't my story.

I have lost nearly everything dear to me being that I'm now bound to a wheelchair or walker most days of the week (I've had RA for 1 year). Meds don't seem to work for me...and I've tried almost all of them. I cannot count the things I've had to give up...driving, walking, working, trying for a baby, hobbies, etc. RA has eroded my bones/joints so fast they've simply stopped moving...many days I can't raise my arms to feed myself. People saying things like "don't let your disease control you" is highly offensive to me (though I know none of you meant to offend, and I won't take it personally).

My answer: yes, you'll have to give things up if your RA gets severe (or if you don't respond or stop responding to meds). This is not a matter of me being a pessimist, it's just a fact. You may have to adapt to your disease at some point, and it won't be fun. You may have to have to pull strength from places you didn't know you had, but you can do it. You may struggle to find meaning in a life that is much changed, but you can find a way if you try. I hope you never have to do those things, but if you do, look for support along the way (like here at DS). Good luck to you. :)

DWO- I am so sorry RA hit you like it did. I really feel for people who are in your position and do not respond to RA drugs like the majority do. It's just not fair.

As for me- When I read about people saying they pay the next day because they over did it....It doesn't happen to me. But when I think of it- I never push myself either. All I do is go to work and come home.

Thank you all for your input. DWO- I can hardly begin to understand how you feel. I know I felt afraid reading about your situation and sad and sorry. I have decided I am not going to complain as much as I can. I am going to try and live life to the fullest as long as I can. Thank you for sharing.

lam0814- I have never been much of a walker even before I got RA. I always excercised thru aerobics but now that is too painful so it's swimming which is working very well. So, I think your doc may be right. I just went and did sometihng I am not used to doing and WALA everything flares up. Thanks for your input. I shall try to take it easier next time and put off hiking to the Hindu Kush for a bit.

Caroline- Wow! 10 hours shopping?? I couldn't manage that no way. You must be a really strong person and patient as well. I need to take a leaf out of your book but I shall do 'it a little slower' as you rightly recommend.

thinksRAstinks: I am going to try not to push myself and take it easy :-) Take care.

Great conversation, all. And is it just me, or is this a HUGE issue??
I think after reading all the replies, I can't help pointing out that some people with RA do no have the luxury of "living now, paying for 2-3 days later." So, it is relative to each situation how much is too much. I know if I had to work, even part-time, I would be living for work, unable to do much more than work and recover from work. But that's just me, and that's just me RIGHT NOW.

But I think one of the "hidden jewels" of MY RA experience has been learning to assess how much I have to give and then give it where it is most important. One of the OTHER jewels is learning to live in a constant state of inconsistency!!
For me, it is also a "mind vs. body" thing---my mind is oh-so-willing to do soooo much; the body? Eh, not so much.

The big question you asked Caspiana "Will it get better??" ... seems kinda hard to get an answer on that. I tend to "plan for the worst, hope for the best" with a lot of trial and error inbetween.

Yes, it will get better. I think you need to start by believing that, understanding, of course, that it doesn't always work out that way.

My personal story is that I was completely disabled, but eventually, drugs (MTX and prednisone) gave me a chance to start doing stuff. At first, anything significant I did (hour in the garden, cooking dinner, short walk) left me out of commission. But it kept getting better.

I've had significant setbacks, as drugs have failed me, and I have altered my way of life and my expectations, but I've had a comeback to cover each of the setbacks I've had so far.

Don't stop dreaming!

d

hopefully, with the right meds, you will come back stronger than ever! i've found that now even small walks cause pain afterwards. so, i'm now doing VERY small walks, and slowly increasing the distance. i've always been very active, and now find that i can't do half of what i used to. but i'm gonna get back there, if it takes me the next 50 years! good luck, sweetie, you can live a full and happy life!
brat

Thanks guys..I feel better today and am determined to do all the things I want to do albeit slowly. *Hugs* You are all so wonderfully helpful.

Really great post.I found out that I had RA almost 2 yrs ago. And thought nothing of it.And that was because I didnt know anything about it. I just thought it was something that came with getting older.I drank for many yrs.Never got into any trouble and have been with my job going on 16 yrs. But I never felt the pain I had till I stop drinking 2 yrs ago.3/15/07.
The pain in my hands were so bad.I couldnt open jars or button my jeans. Just simple things.I went to the Dr. and when she told me of my problem and what had to be done , well I just couldnt believe it. Thats when I found this group, 2yrs ago and what a help !This group has taught me so much about something that I didnt know anything about.
My RA is servere. My fingers are deform and noudles are poping up everywhere.
I take my meds and do what the Dr. ask me to do. I pray. And I try everyday to do everything.I rescue animals. Mainly dogs and cats. And my little house is full. (of love)and I also work a full time job. Truck Driver.Some days I almost cant move but like most of you here say , we just take it slowly. But I try not to let it get me down.
I do have those moments and then pull my mind out of it and try hard to carry on.
Whats the hardest for me is that I am the only women driver at work. And many of them know nothing about RA, just like me. I might be limpimg one morning and not feeling well. Or I will be rubbing my hand and fingers. They will make smart coments to me as if I am trying to get out of working. But I hang in there and do my job.They dont seem to understand how bad RA can bring a person down.Its not easy to live with it but it can be done ......just a little slower.
Have a pain free evening..
Juanita

I have had ra forbgoing on three yrs now, at first I was terrible litterally couldn't get out of bed, then was introduced to meds and feel 10x better. Never again 100x. I push myself everyday, even though sometimes I shouldn't. But everyday I hurt some where for sometime especially in this tx weather right now. I hate being cold, my body hurts and I have to work. Summer is good, humidty is bad the day before the storm, day after I feel good. I get tired and my knees are starting to hurt. So right now, its an everyday thing even with meds, lots of them. It's a sad thing, but iam greatfull still to know I am okay, I will be okay, and I'm lucky its 2009 and not 1970's. With pain and nodules I do get down, but I know I have to be strong for my family. I keep busy, do all house work cause when I do sit down, I'm not getting up!! I hurt and am so tired when bed times comes, I take my meds and am at peace that I did do a lot today, but the day is over now..... Now I can knock out with my tramadol and hope to feel good in the morning!!! I believe you have to be strong in the mind and heart, and you will get through your tough times, count your blessings, love yourself, and hope for the best !!!

i think we have all had our good days and bad days... and finding the right mix of drugs can make a world of difference of what you can and can't do. it can also be amazing how you can figure out how to do things new and different ways... not ususally easier though... good luck. i am a waitress and work 25 - 33 hours in three days every week and have never had to miss work, but finding new and different ways to carry those trays has been interesting..... hugs,deby

Juanita I used to drink too quite a bit everyday but since I was diagnosed I stopped drinking eveyday. It's hard because it was always so much part of my social life. The good news is that I have started to drop pounds with excercise and proper diet but I think not drinking helps alot too.
When you said you rescue animal I smiled to myself because that's what my mum used to do. We had anything between 4-5 dogs at any given time. I am sure you house must be full of furry love :-)
I am sorry to hear your fingers are deformed. I am amazed though at how positive you are and how you just keep trying at everything you are doing. I mean a truck driving job must be stressful since you have to drive long distances. I think it's hard for people to understand the pain we have. I don't have any visible nodules or any deformaties neither do my hands look swollen but the pain is there and I think it's hard for people who know I have RA to understand the pain because there is nothing really visibly wrong with me. I guess the people who make smart comments really just don't understand.
Erica you sound like me get all the house work done and on a good day maybe clean out the attic! This followed by crashing into my bed hoping the next day I am not going to be paying for it :-)
I hope everyone is having a goog weekend. Take care.