Why?
I'm not sure why I feel out of the habit of writing daily. I think sometimes, no make that I know sometimes, I just get tired of the whole RA mess. I get tired of not being able to count on my body. Like this weekend was a good example. I've been planning for a week to attend my new church's 120 anniversary. A big pot luck dinner was planned after a special service. I make my baked beans the night before, actually slept in a little and then made brownies. I knew when I got up there wasn't a joint that didn't hurt. O.K, I said to myself, I will be O.K. once I eat breakfast and take my meds. I kept waiting for relief. I'll be O.K. I just have to sit in church. I read the Sunday paper. I'll be O.K. I kept telling myself as I was falling asleep in the recliner. I'll be O.K., my mantra for the morning. Then it hit me, as I was trying to figure out how I could carry two plates of brownies and my baked beans into church without making two trips, I was NOT O.K. I was NOT going to make it to the lunch. I was NOT going to make it to the special service that I'd looked forward to for weeks. And once again I felt like I'd let people down. I know the service went on without me and like all church potlucks, they had plenty of food. But it was the fact that once again, something I wanted to do, I mean REALLY wanted to do, I could not. Like I said, I get tired of the realities of the disease.
Replies
You said it. This is exactly what happens. The things we really want to do in life, we can\'t. Nobody understands the frustration, and pain - not just the joint pain.
My GF is doing a wedding shower for a friend. They are coming up with games for it, and one of them is to put on stockings, while wearing oven mittens. I thought (to myself of course because nobody but us how have it knows), \"My gosh! That\'s it! It\'s a fun game for these people - it is reality and every day life for some of us with RA. Maybe I can turn it into a thread out there. Thanks for the idea!
Well, I\'m sorry about your bad day. This really is a rotten disease. I\'m just wondering, are you taking prednisone? Can your doctor give you something for a short-term fix? Help is just around the corner, they keep telling me!
Hugs!!!!
Thanks for understanding. I\'m not sure why it helps, but it does! :) Yes, I take prednisone, MTX, NSAID, and am due for another Orencia infusion on Wed. If it were a regular week, I\'d have already upped the prednisone. But this is my 4th dose of Orencia, the ONE when I\'m supposed to be able to tell a difference, if it is going to make a difference. So I\'ve been holding off upping anything. I want to know if the Orencia is worth the $$$$\'s, Thanks again!