But perhaps not the kind you think. Yes, I did have a mixup with my xeljanz. Complicated by the fact that I use an old lady pill box and therefore only look at the actual bottles of medicine every 14 days and didn’t catch that I only had 3 days of xeljanz left. Also complicated by the fact that my insurance company switched specialty pharmacies and while all the correspondence said I would still get refill reminder calls and everything would transfer and business as usual, none of it actually happened that way. And final complication of my prior authorization expiring two weeks ago and rheu ..read more

Definitely the first, hopefully the one and only. Falling is one of my greatest fears. With permanent joint damage in my wrists, the thought of forcefully propelling all my body weight on to them is terrifying. In the grand scheme of things, this wasn’t a bad fall. You’d think I would hurt myself on a house project but no, I was quite literally taking out my trash and on my way back in, tripped over my own dang feet. I tripped, stumbled a few steps while trying to catch myself, and finally landed on wrists and knees on my concrete porch. And…I was fine. Wrists were sore for a few minutes but ..read more

I have three strikes against me when it comes to fixing up my house. 1. What I lack in skill, which is quite a lot, I make up for in confidence. 2. I don’t let RA hold me back, even when perhaps it isn’t the best idea. 3. I was raised by people who are cheap and don’t like paying other people to do something unless it’s absolutely necessary. I embrace the DIY to perhaps an unhealthy extent. So with that said, I figure I’d give the highlight reel of what’s been happening to my house over the past few months. The Front Porch I decided long ago that the former owners are assholes due to the lack ..read more

One of my all time favorite movies will always be Annie and one of my favorite moments of that movie has always been the song It’s A Hard Knock Life. Someone asked me recently if I ever get tired of having to constantly put thought into managing my life and RA. It caught me off guard because I don’t think I’ve ever really thought about it. My immediate answer was YES! SO MUCH RESPONSIBILITY! And it immediately reminded me of that song. Orphans making beds, running to mop floors, sliding down stairs to clean rails, dancing across beds to smuggle a girl out in the laundry…well maybe not that ..read more

My intention was to write this as a part of RD Blog Week but life happens and I got slammed after writing half of it. But the prompt really spoke to me- advice I’d give to my newly diagnosed self- because I’m often asked to give advice to others but have never really thought about what I would’ve wanted to hear if I could pull a Back To The Future on myself. So power up the Delorean and let’s see if I can send this letter back to 2005. Dear 2005 Amanda, First things first, stop googling. Seriously. Stop. You will learn nothing productive there, you will actually hear a lot of things that m ..read more

When your RA is stable, you make time to handle all the other things. Or at least I do. Not that I put them off at other times, it’s just I have more time and emotional bandwidth to stay on top of things. Did you know that some of our medications can increase the incidence of skin cancer? Because RA is the gift that keeps on giving. Or perhaps because, like many of my family members, we are not a people of the sun. I am pale like a vampire. Or maybe a bit of both. This past week, I had my third basal cell carcinoma removed. From my face nonetheless. This is my second one on my face. Enough ..read more

I got back the other week from a whirlwind trip to DC with the ACR. I’ve been participating in the American College of Rheumatology’s annual Advocates for Arthritis event off and on since 2009. If you haven’t heard of it, check it out. I look forward to it every year but honestly, it also kinda breaks my heart that I am selected to attend every year. The goal of the program is to train new patient advocates; that I am chosen year after year and that I’m typically the only patient from NC makes me think that I’m also usually the only NC patient who applies. NC patients, as much as I love this ..read more

It’s been a good few months health wise but a very very tough few months emotionally. On April 26th, in the middle of a rainstorm that came out of nowhere, my sweet sweet Molly cat crossed the rainbow bridge. I’m not religious but rain has always been comforting to me and I don’t think it’s a coincidence that it came out of nowhere to help me help her cross over. She was almost 17 and had battled end stage renal disease like the magnificent beast she always had been. I honestly believe she knew what was happening and I also believe she hung on as long as she could because while she was ready ..read more

Hello much neglected blog of mine! While you were neglected, you were thought of quite a bit. I’ve struggled for probably 2 years with what my plan is for you. You see, I started getting invited to things and asked my opinion on things and suddenly, I thought I needed to have some overarching planning. To instill you with words of wisdom that I thought I didn’t possess or wasn’t qualified to give. I also struggled because I’m stable which made me think that perhaps my voice wasn’t as needed…it does seem like a lot of bloggers disappear when their health improves and I also *don’t* want to ..read more