I did a few times many years ago. A friend of mine with Lupus uses a simple system on her regular calender: if it's a good day she circles the date with green. If it's an "ok" day, she cirles it in red. If it's a horrible day she circles the date in black. She has a dr. who doesn't pay much attn. except to what she presents with THAT DAY. So she started doing this so she can present a simple total of the total good, ok, or bad days since her last appt. I thought it was a great idea.
I'm curious if anyone charts their symptoms, and what method do you use?
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I do in my purse calender. I also have a simple system. I rate the pain and activity level and flares, with a number system and it is wear I keep a schedule of activites or appointments, to report to PCP and Rheumy. When I have more than half the days in significant pain it is time to change or adjust meds.
that is a great idea. The last two weeks I have felt pretty good every day - which is an anomaly! I don't think I am 'cured' but riding this feeling as long as it lasts! Not that I am pessimistic but I know it will end sooner or later (I prefer). Several other pains have disappeared as well - ones that my former rheumy said was not related to PSA, such as my tennis elbow/golfers elbow and heart palpitations. I am enjoying this time of my life. However, I thought I would track on a daily basis when this 'remission' is over. Feel this is good information to present to the rheumy if need be. Ever feel like we are all clinical studies and teaching the physicians with what we figure out on our own?
One question I throw out to anyone: have you had an extended 'pain-free' period that you enjoyed but wait for the shoe to drop and it is over? Struggle every day that I am going wake up and feel lousy! Anyone have advice?
slb
I do feel we teach the doctors and anticipate the day we know all about this disease. I sometimes feel our understanding of this disease is in it's infancy and what we learn will benefit our sons and daughters. I do feel during pain free periods (though lately they are few and far between for me right now!!) that I am waiting for the other shoe to drop. I try to turn it around in my mind to be mindful to fully enjoy my pain free body. Some times I can some times I can't. Congratulations on your pain free days.
I've had a few remissions over the years. Just revel in it and enjoy it! Just know that at some point it will come back. I've had remissions end from pretty big things. One ended from going off to college and then getting a horrid infection. Another one was from childbirth / massive hormonal flux. Years later my Enbrel remission ended because I needed emergency surgery and my body just flipped out.
I've never had a remission end for really no reason. It may be different for others, but I wanted to share that so that maybe you can stop worrying about the little things ending your remission.
breckstar said:
that is a great idea. The last two weeks I have felt pretty good every day - which is an anomaly! I don't think I am 'cured' but riding this feeling as long as it lasts! Not that I am pessimistic but I know it will end sooner or later (I prefer). Several other pains have disappeared as well - ones that my former rheumy said was not related to PSA, such as my tennis elbow/golfers elbow and heart palpitations. I am enjoying this time of my life. However, I thought I would track on a daily basis when this 'remission' is over. Feel this is good information to present to the rheumy if need be. Ever feel like we are all clinical studies and teaching the physicians with what we figure out on our own?
One question I throw out to anyone: have you had an extended 'pain-free' period that you enjoyed but wait for the shoe to drop and it is over? Struggle every day that I am going wake up and feel lousy! Anyone have advice?
slb