things that can be related to RA

• lump in throat & pain when swallowing x
• low grade fever, even if normal temp is lower x x x x
• jaw pain and stiffness/"TMJ" x
• lack of appetite x
• throat things x

early signs

• "Any of these symptoms (don't have to have all of them) can be associated with the early stages of an autoimmune disease: allergies, depression, digestive symptoms, fatigue, blood sugar issues, gallbladder disease, memory problems, migraines, PMS, rashes and other skin problems, recurrent headaches, resistance to weight loss, sleep disturbances, susceptibility to infections, thyroid problems, yeast infections. Don't ignore these symptoms! They are trying to tell you something."x

good to know

• "I kept a "sick" journal that I wrote in daily. I also wrote a letter to the disability analyst stating I am more than just words on paper and poured out my feelings. Both disability and my doctor got a copy of sick journal. I started the journal because it is so easy to forget things when you are chronically ill. I also made a list of things I cannot do . I got no argument from disability and was approved within 8 months." x
• "If insurance is a issue with the biologics don’t be afraid to contact the drug manufacturer they have all kinds of programs for people in different financial situations and some virtually give the meds away." x
• " Wearing the wrist braces helps a lot, even with the pain in my elbow/ shoulder. It has to do with the nerves and the swelling RA produces. Get the kind that does not strap around the wrist, only on the side." x

first symptoms

• "My first RA flare was in my left shoulder. I thought maybe I’d slept on it wrong, somehow, though how sleeping on it could make it so painful I couldn’t raise my arm didn’t occur to me. I just didn’t have context for it." x
• "I had “TMJ” in high school that was probably RA (erosions now at 31), then foot pain that was “RSD” in college and kept me from running, then my wrists kicked in around 29, and that’s when RA was finally diagnosed." x
• "Mine started initially with occasional wrist pain. Fast forward 10yrs, then it really kicked off beginning with my knees & rapidly spreading to almost every joint in my body. Have had RA almost 3 years now & in that time only had swelling once in my left elbow & once in both hands. The pain & stiffness has been horrendous at times but through all that i had none of the swelling that the doctors look out for." x
• "The onset, initially, felt like a bout of flu from hell. Then, the additional symptoms appeared & I knew it wasn’t flu." x
• "I “think” it was fatigue, I seriously believed I was just lazy or depressed. " x

self-definition

• "What are we when we no longer do the things that defined us? When there are no more masks or props to help us define ourselves? We are whatever it is that we truly value. We are whatever it was that motivated us to do the things that we did when we could do them. We are our character and our spirit." x
• "I had this situation come up early in my prognosis. My sister, a nurse, said the same thing to me. Do not make your life all about your RA. My life is about my RA as it is my constraint. It is my constant companion. I can focus on what I can do, and make that my goal, but asking me to deny my RA is like asking me to deny that I breathe. Basically, you’re asking me to ignore my chronic illness. In a word, I can’t. But what I can do is work with my body, instead of against it, learn my new normal, and try to do the best I can to be the best me I can. And that me includes my RA. That’s just a fact."

bs

• low pain threshold? x
• hypochondriasis and overfocusing
  • "I don’t think we are hypochondriacs. What I do think is that if any of these doctors who treat us had to deal with RA themselves they’d be just as “overfocused” and “preoccupied”… how can you not be preoccupied with something that permeates every piece and waking moment of your life?" x
• "arthritis" vs. systemic disease x
  • "AF [Arthritis Foundation] is about “arthritis” (OA) and most RA patients I meet want the Arthritis part of the name of this Rheumatoid disease changed."
• "Every movement I make is difficult because of stiffness, weakness, or limited range of motion. Just because I don’t cry out doesn’t mean I’m not in pain. Could you cry out all day long? If the pain never leaves, you have to learn to tolerate it, and that’s what we do. I hardly ever say a thing about symptoms that are always there. Because I know they sound ridiculous. Can anyone else see the irony in people thinking we exaggerate symptoms that are so much worse than we say?" x
• "No doctor can know everything about everything. But there’s one thing that makes ignorance unacceptable: arrogance. A doctor needs to know that he doesn’t know things, so he can continue to learn." x