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.
Hello! I can’t believe how long it’s been since I’ve posted on here. Very embarrassing. So many things have happened regarding my health, work, family, and friends since November. There’s a lot to catch up on and I am going to do it!
Right now, I’m going through a pretty bad flare-up in both feet and ankles and a bit in my hands. The feet/ankles flare started about a week ago and then got quickly worse while I was in Chicago last weekend for a wonderful conference called HealtheVoices. I will write more about that very soon, I promise! Despite suffering through the staggering physical and emotional pain of the flare, I was so inspired and energized being a part of the conference again (I was at the first one held last year in Jersey City, NJ). Just being there with my fellow RA friends and advocates as well as connecting with people who are advocates regarding other chronic illnesses…it was incredibly motivating and empowering. But more on that later! Know that there are a lot of people out there who really care about those who live with RA and are passionate about making lives better. This gives me great hope.
This post is a bit rambling and scrambling, but I wanted to post something now. Finally! I’m still here and this blog and cause are still so very important to me. They always will be. :)
I hope you’re all happy and as pain-free as possible out there…in the Internet universe.
Where does the time go? Seriously. So much has happened just within the span of a few weeks, but in a way it feels much longer ago than that.
OCTOBER: In late October I flew to New Jersey to participate in an advisory panel for a pharmaceutical company. It was a one-day consulting job, but I found it to be very professional, interesting, and a great chance to discuss RA and RA-related issues with others who are involved in rheumatology and healthcare.
After New Jersey, I decided to swing over to NYC for a brief visit (since I was in the neighborhood), and I had a wonderful time staying with my friend Holly in her little apartment in Hell’s Kitchen, Manhattan. It felt both odd and good to be back in New York, after I had to leave it so miserably and abruptly at the end of August. This time, I didn’t want to leave.
NOVEMBER: A week after I returned from NJ/NYC, I found myself on a plane yet again (I’m usually not such a jetsetter), this time heading to San Francisco for the annual Joint Decisions Empowerment Summit. This year it was actually held in Sausalito, which proved to be a perfect and beautiful choice for a location. The summit was excellent, as it was last year in Boston, and I will write a more in-depth update about that soon.
The last day of our Joint Decisions summit, most of us RA bloggers/activists traveled over to San Francisco to attend the American College of Rheumatology‘s annual meeting/conference. This was my second time attending and experiencing ACR, and wow, yet again I was impressed at its massiveness and global importance in the field of rheumatology and healthcare.
So right now, I’m desperately trying to play catch-up in the other areas of my life: work (substitute teaching, writing, photography), family, and my health.