I just posted this all over my social media pages yesterday because I love it! Having RA and an invisible illness, this statement really resonates with me. I often struggle with feeling “lazy” (and then guilty) just trying to make it through each day living with this exhausting disease. I’m NOT lazy, though. None of us are. We’re doing the best we can while living with constant, debilitating pain. That should be enough.
This is happening tonight! Very soon, actually. Join us on Twitter in about 30 minutes if you can! We’ll be chatting about making decisions about treatments, preparing for doctor appointments, and getting involved in healthcare policy work.
My Twitter handle is @aclundberg (if you don’t already know!). See you online soon!
Happy April! It’s APRIL already? How did this happen? Life moves too fast sometimes (when you’re busy running to medical appointments every other day, ha).
Well anyway, I’m happy that the weather is starting to get nicer and that Spring is approaching (hopefully). I’m also happy to be starting this little 30-day project for the month of April: 30 Days with RA.
I wrote an article about it recently for RheumatoidArthritis.net (the link above), which can give you a better, more-detailed explanation of the project, if you’re interested.
I know I haven’t updated this blog in seemingly forever. Sincere apologies (I’m embarrassed about this)! 2016 was one of the most challenging years I’ve ever experienced, I’d argue, and it used up a lot of my time, energy, and health. I know I’m being vague here, but I’ll explain more in following posts. I’m really glad that a new year is finally here and I hope it will be happy and healthy for everyone!
That said, here’s a recently published article of mine on rheumatoidarthritis.net about the issue of rising and unaffordable out-of-pocket costs for people who currently have health insurance. I know I’m not alone is having to deal with this issue.
I’ve lived most of my adult life being “dangerously uncovered” even while having health insurance. I know that the fate of our country’s health insurance is on shaky ground right now; it will be interesting (and hopefully not alarming) to see what happens in the near future with the Affordable Care Act and the Trump administration.
Aaaand…I’m recently on Humira. Again. Xeljanz (as well as Actemra) failed me. Last Friday I gave myself my fourth injection, which now equals two months of being on Humira. Unfortunately, maddeningly, I’m still taking prednisone and I’m still having pain and swelling in my fingers and feet and ankles. I’m not happy about this. Actually, I’m trying hard to not be scared to death about it. Are the anti-TNFs no longer working? Will anything work?! Will I ever get off prednisone?
Here’s another update I wrote for RheumatoidArthritis.net about what’s been going on in my RA life, and specifically about the recent switch back to Humira:
My body is really frustrating me lately. In fact, I kind of hate it. I know that’s not a great attitude to have and being angry and pessimistic will not make things better. It’s really hard though when you feel like you’re playing this never-ending game of musical chairs or “musical drugs.” But it doesn’t sound much like music to me–more like the unbearable shrieking sound of “WE’RE NOT GOING TO HELP YOU!” screaming over and over in my head.
Come on, Humira. Get moving and do what you’re supposed to do, please. Please.