All posts tagged: RA progression

RA Pain, Coping and mother’s advice

  Beginning with the first symptoms of my rheumatoid arthritis (RA), I have lived in daily pain. It has been over four years. It has been a long time. Rheumatoid arthritis is an autoimmune disease. My body is on a suicide mission to destroy the linings of  the movable joints in my body. It is a scary disease in that it is unpredictable and it is progressive. I spent the first two years with severe fatigue/malaise. And it was as bad as the pain. This malaise is caused by cytokines, products of inflammation. Cytokines circulate in my bloodstream spreading RA damage. Add that to a high level of pain and it can be overwhelming. I wake to stiff, painful joints. In the morning as I walk painfully down to the kitchen to make coffee, there are times when I have become angry and tired of it all. I start the day in pain and I end the day in pain. It is too much. My feet are becoming deformed and I find it difficult to …

Adding a second autoimmune disease to RA

I have long  appointments with my rheumatologist. She is thorough and listens to what I say. She does think out loud which may be disturbing to some. I understand where she is going and I understand she is throwing out possibilities not absolutes.  I had a number of revelations but a big one was the possibility of adding polymyalgia rheumatica to my RA diagnosis. For the last six weeks I have been having excruciating pain in my left hip and my whole pelvic girdle. I was also having excruciating pain in my left shoulder. Life was  difficult. I had no idea what was going on. I have a protocol to increase my medrol for flares.  I did. Medrol did provide relief. Once I was done with the medrol my pain returned. My doc listened, examined. She ordered x-rays. She mentioned the possibility of sending me to an orthopedic doc. She mentioned             polymyalgia rheumatica. Then we moved on to other issues. Polymyalgia rheumatica affects those over 65 years. It affects the pelvic girdle and …

MY RA Book

  I am making progress! I started writing a book on RA a year ago. I have deep experiences as a patient. I have read extensively. I have written extensively. I have read much about other people living with the challenges of RA.  However, my book is starting to look like a textbook. This is not my intention. Fortunately for me I read a short book on organizing a kindle non-fiction book. It all made sense and I am now ready to go. I plan to have my book up and ready by midsummer. Unfortunately,  my RA is on a steady progressive course. I have tried most of the drugs on the list for RA and only a select few work. I am not one of the fortunate ones who make stunning progress with the biologics. I am grateful that they do work for some. Still I have to plod along my own RA path. My book will put together the RA basics for a grounded base. It will discuss the role of advocating for yourself as vital to …