1) REACH OUT! Keep in touch with your friends and try to keep your support network alive. One of the worst things that can happen to you is to lose your support network. You also need to build up some people who get this side of things, I think. Meeting people online has served most of this purpose for me. Do expect that some people just won’t be able to ‘get’ the whole living with a chronic illness thing and may be put off by it and kind of ‘fade out’ of your life. Hurts like hell, but it seems to happen to all of us. Making sure you spread around asking for help (instead of burning out a few people) and finding time and energy for things that aren’t medical seem to be really important in preventing that.

2) Learn new hobbies that don’t upset your illness, if your current hobbies do. I had to give up a lot of my more physical hobbies because they made heavy use of my hips, which are problem joints for me.

3) A kind of zen mindset seems to help a lot of people. Accepting what is does not mean ‘giving up’ or ‘losing hope’, it means working within the current limits. A zen outlook can help a lot with that. It can take a lot of the stress and pressure to HEAL NOW DAMN IT off of you. (That is, when you’re able to maintain it. I, ah, don’t do so well at this one)

4) Keep in mind that not all people need the stereotypically perfect person to find them wonderful. I met my boyfriend when I walked with a cane, and he’s been with me while that changed to two canes, a pair of crutches, and finally a service dog. I also wear a ton of braces (er, when I’m being good and wearing them). So it’s possible to find someone who can look past all the medical hardware and body problems and still see you for an attractive person. While I may not have the deformation that can come with RA, I have my share of ‘that body part doesn’t work to original specifications anymore’. And when the first of them came up, yeah, it was horrendously embarassing, and I spent a bit of time in the shower crying – to me, it had been this HUGE deal (um, let’s just say my GI system is disagreeable sometimes). The boyfriend’s only question was whether I felt up to having him stay or if I’d feel better resting alone.

You’re welcome to come chatter over at my blog about things, too – I talk a lot about what living with a disability like mine is like, and what living with a disability in general as a young person is like, so who knows, maybe some of it will resonate with you.

~Kali
http://www.brilliantmindbrokenbody.wordpress.com

Keep your joints warm and moving. Get up and move around frequently. Stretch gently and put your joints through as much range-of-motion as you can. Get an early referral to a physical therapist and an occupational therapist. They can give you an appropriate home exercise program to keep your joints and muscles (especially the muscles) from deteriorating (as rapidly). That’s one of the “right” things I did. I started using night splints right away, and they have really helped my hands not deterioriate as rapidly. Getting on DMARDS early was another “good” thing.

Yours for good health! And, yes, it WILL be a Good and Happy New Year!

Apart from the odd joint flaring here and there, I have only had the one multiple joint flare up that only lasted two days because I went to the doctor immediately and got prescribed Diclofenac and the flare stopped more or less straight away.

During those two days though I got a serious glimpse of the regular pain that you all talk about, and the thought that this could happen suddenly out of nowhere, even when on DMARDS scares the shit out of me!

Do these DMARD drugs not work then??
At the moment I am still on Prednisolone and the Salazopyrin EN hasnt kicked in yet, but the thought of these drugs not working when I have finished tapering the Prednisolone is worrying.

Are there any people on here who don’t use any drugs at all and just find relief with a change or lifestyle and organic treatments?

Anyway, I am here now, one of you lot, whether I turn out to be a superhero remains to be seen, but I am sure I will be a regular reader of blogs like these and will be in your faces a bit with questions…

Thank you all again!
Happy ******* New Year!

Be your own best advocate, because believe me, no one is going to do it for you. Educate your family and friends about RA, particularly about the fact that it’s unpredictable. Except for the pain (which is variable in intensity and length of duration), RA’s unpredictability is probably the hardest thing about the disease to cope with.

Finally, have patience. In this hurry-up world of ours patience is tough, but with RA you don’t have much choice. It takes time for medications to work, and sometimes what works for that guy over there won’t work for you. It’s truly trial and error. You could get upset over this, but all that will do is make it harder to cope; it sure won’t speed up the process. Just stick with it and in the meantime, try alternatives to drugs like meditation, tai chi, and accupuncture. They can’t hurt at all, but they sure might help.

Finally, remember you’re not alone, even though it seems that way. Like WarmSocks said, you’ve got a whole army of people who are also fighting this disease ready to offer their moral support and empathetic ears. It’s worthwhile, too, to see if the Arthritis Foundation offers any classes on coping or exercise in your area. It helps immeasurably to know that you don’t have to face the reality of rheumatoid arthritis alone.

Best of luck to you. I hope the new year brings you peace and joy. You’re on an adventure, facing a new challenge. You’re up to it.