When you take a Stand

Mine seems to be understanding. At first he had the shock look but I don't think he is used to people actually taking part in their care.

Like I told him, "If I don't feel comfortable with it I won't do it and how is that going to help at all if you prescribe a med for me and I won't take it."

He understands and I was firm with him that the final decision on what I agree to or not is MY call and not his!

     I read both your post and the reply with interest.  My sister who has polymyalgia rheumatica was put on prednisone (post-menopausal), which is about all they can do for that (it's not RA) and was also taking Aleve - she ended up with GI bleeding, throwing up blood in the ER, and was hospitalized.  Bad combination.  Another friend of mine who counsels mental health patients had a psychotic episode with hallucinations, from pred.  This happens to some people, it can be more than just anger.  (The friend said, here she was counseling patients and she felt like one of them...)

     I too had to take a stand with my doctor.  I refused Remicade after two infusions, for two reasons:  1) I was terrified of it anyway because my aunt with RA (in her late 70s) was started on it, and suddenly could play tennis again - but after the next infusion she had a fatal stroke - maybe no relation, but maybe her fragile body just couldn't handle that degree of change, even a good one. And 2) because the 100 mg of Benadryl they gave me in the IV to counteract the itchy/antsy reaction I had (and it didn't prevent it), made me so dopey I barely made the 70 mile drive home (duh - they didn't bother to let me know ahead of time so someone could drive me!).  I was furious afterward and called and told them I was more at risk from the Benadryl than from the RA (at that point, true, but not later...)   We parted company for 6 months, while I researched and talked to people, and then (when I was seriously hurting again) I went back and said, I want to try Enbrel.  That was 4 1/2 years ago, and I'm still on it.  We both respect each other's opinions now, though we don't always agree.  I had the flexibility to take it according to my schedule and not drive 70 miles each way, take time from work, etc. 

     It's important to listen to your gut instincts - and also to keep an open mind.  Sometimes circumstances change, our bodies change for better or for worse, they may become more or less sensitive to a given med, the seasons and different foods can affect us.  It's very difficult to sort it all out but - what other choice is there? 

     As much as I regret having to spend so much time and energy on *ME* instead of interesting/creative stuff (whether job or hobby or recreation), I've come to realize that the most important 'creation' is our own life, who we are.  What we make of what we've been given (or left with, as the case may be).  That may mean sitting on the couch accepting kisses from our 5-year-old, listening to the emotional tone of our teen, calling a friend with whom you can REALLY share (my best phone buddy is a friend who is even more disabled than me, and she's my best listener - and that gives her a boost, to know that she can help me by listening, and vice versa.  We  both share that frustration of wanting so much to do more than we can.

     Relationships, especially as we get older, are INCREDIBLY IMPORTANT.  They need to be nourished, that takes time, when we are able, and forgiving ourselves when we can't.  (And forgiving others when they are unable to understand...reach out anyway and try to educate them gently.)  Hope I've not said too much ...

     Booboo, I look forward to reading about BOTH your "tomorrow topics".