How Your Life Has Changed with RA
I battled for 3 years to get answers as to why my joints started to hurt, and hurt so bad that I would have tears streaming down my face. It took many trips to many different Dr's and specialists some of which blew me off and told me nothing was wrong. One of which was down right abusive to finally get the diagnosis of...
View MoreGive us a bit of your unique backstory. How did you learn you had RA?
Pain that started in a few joints and spread like wildfire to every joint. It took three years to get docs to take me seriously because blood work wasn't showing it. I saw three Rheumies, 2 of which told me said I had nothing wrong with me despite crying in pain from my joints. I'm now diagnosed with lupus and RA. My joint pain and swelling is progressing fast. Went through all the DMARDs that made me sick in other ways. On my second biologic, which is finally helping.
How has RA changed life for you and your family? Describe the changes that took place.
It's so unpredictable between RA and lupus. It's hard to make plans. I never know if I'll feel well enough. Add in working around meds that knock me out. Fatigue can be brutal and almost more debilitating than the pain. It also affects my husband as we can never easily go anywhere. Also it seems my whole life now is consumed with one medical appointment after another. Right now I'm either booked or waiting for a booking to see 6 different specialists. RA and lupus do not only affect joints. They also affect the organs.
What is the best advice you would give to someone recently diagnosed?
Research. Research the medications in particular but research what you're living with as docs tell you nothing at all. Some meds are so dangerous and hard on the body, make an educated choice on what you are willing to take and not. Be your own best advocate. You know your body better than the docs. One of the main meds docs will want to treat you with is steroids, which are very dangerous medications. I will not take it. I've had to turn it down many times and some docs don't like that but I'm the one who has to live with the horrible side effects and damage they cause.
I started a FB support group and that's been so helpful to me and others. We can all relate.
https://www.facebook.com/groups/crankypantsautoimmunediseaesupport/
