Met with my rheumatology nurse today- she was so lovely and shook hands with me ever so gently I nearly started crying. We discussed what has been happening since December and then I announced that I thought perhaps the consultant was wrong and it was not RA I have- she looked at me and asked why, so I said with petted lip, my bloods are not showing a RF and I am seronnegative, also I just hurt everywhere, not just the major joints, but my wrists and toes and even my friggin jaw! That pain meds are just not doing it for me, MTX of 10 mgs, only started three weeks ago is only succeeding in making me sick all the time and the anti- emetic she has prescribed is not really helping. Also every single bone in my body has developed the ability to be able to crack- and.......... occupational therapy have contacted me and i have to go see them!!!! I am not an invalid! She smiled and asked if she could be totally honest, of course I said- she laughed and said, you need a good slap and I am telling you there is no question of this not being RA. At that I burst out laughing and admitted I had sounded pathetic and angry, all normal she said, so how do we move forward.
Well the long and the short of it is I need to learn to pace myself, I need to accept that while this disease continues to be as bad as it is right now, and it seems to get worse by the hour today, that I really do need help to manage it. She has changed me to subQ methotrexate and if no improvement in the swelling and pain will opt for IV steroids in two weeks
I find myself crying so much just now and all I want to do is to be able to go for a long walk in the hills just as I was doing three months ago, go for a cycle ride, plan my long distance walking holiday , knit some baby clothes, redecorate my home and not be sore and exhausted. The child in me just now is shouting I want my old life back, am so so angry and I know it is ridiculous and petulant and I know there are others so much worse but ..........
Hey guys, I am sorry for venting and truly I will work it out but for now I just wanted to share and talk with someone who understands- who will show me compassion but not pity, and will laugh with me when I have to use my teeth to get the top of the milk carton of and cry with me when the waves of exhaustion hit. Thinking about you all out there