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I have to admit, I don't know what to do. Since I was disgnosed with RA in 2003, I have never had a remission as long as this one. I am officially 34 days without a flare. I am only on my methrexate and Enbrel, and am tapering off my prednisone (down to 5 mg)
My mild Florida winter has been full of extreme temperature changes every 3-4 days, that last year would have been pretty much incapacitating, keeping me home in bed on percocet and steroid packs and feeling miserable to boot. I have so much more stress at this time in my life (Job woes, job interviewing, son getting married,economy stinks) that I would normally have been pushed in to a flare.
I should be so happy enbracing the fact that I feel good for a change. I didn't start a new diet, eliminate foods or try some over the counter miracle drug. The only thing that may have made a difference is my going back on to my premarin (hormone replacement)after 3 years of fighting with my primary doc. ("you'll increase your risk of cancer or heart disease"....yeah, so I was on every biologic in the past 5 years, plus Rituxan, a chemo...and I'm still here. Difference is I feel more human not to be having 100 embarassing hot flashes a week; especially since I work in the nursery with newborns under overhead warmers..not cool to drip on the babies while I have the mother of all hot flashes.
I still, however feel guilty. Why should all my RA friends not be able to achieve some part of this happy and painless state? I live looking over on shoulder witing for the RA shoe to drop again, but in the meantime I catch up with some long overdue projects while I can.
At my last Rheumey visit in January (also my last clinical trial date marking 6 months since my last Rituxan and enbrel combo)we discussed moving in to another clinical trial using Actemra. I have been thinking about this for several weeks..I don't want to rock the good boat I am on right now with just the MTX and Enbrel. I like where I am right now and want to stay here for a while. So, after weeks of thinking I plan to just stay on the status quo and see where it takes me.
I have some interesting things ahead on the horizon, the most exciting is the possibility of a new job...should get word this week on that, I thought my interviews were excellent, and this time I can actually keep my fingers crossed!
Wish me luck, and have a pain-free day!
Congratulations!! You really shouldn't feel guilty. Just enjoy it all to the fullest. :-)
ReplyDeleteDon't feel guilty....enjoy!! when I was on my enbrel and metho I felt wonderful!! I was weaned off the metho and still felt great! But after a couple of years my rheumo dr wanted me off the Enbrel for a while. Keep on enjoying your life! You've paid your dues and if the meds are working.....don't rock that boat!!! ENJOY EVERY MINUTE OF IT!!!!
ReplyDeleteNo, no, don't feel guilty! I am the same way, though. I'll go into remission for a month or sometimes two at a time and I'll start to feel guilty about feeling so good, but there is no need. Feeling good is your goal. It's what taking all this medication and rest is all about. If you didn't have some goodness after all that, what would the point be?
ReplyDeleteEnjoy your good feeling time! :)
Rheumatoid Blogwritis...such a clever title for your blog!!!
ReplyDelete- RA SB
Awww, don't feel guilty! When I had my remission I was too busy enjoying it too feel guilty. You should be doing the same! None of us want you to feel bad. :)
ReplyDeleteI think it's great to be hearing more remission stories. It gives us all hope. I really do believe that having a positive attitude is extremely helpful in feeling well.